31 for 21: why is October Down syndrome awareness month?

So this question entered my mind as I was talking about how busy the month of October is to my husband, whose birthday is in October as well as another couple family members. But October seems to be dominated by breast cancer, and while I love that we have a month commited to celebrate Down syndrome, I always wondered why. It seems like March was more fitting, with world Down syndrome day being 3/21 for 3 copies of the 21st chromosome, as well as the start of spring, one of my favorite seasons, especially after a harsh Chicago winter. 

So I googled it and came across this article (click to view), and was surprised to see that president Reagan proclaimed it to be back in 1984. What was even more surprising (and distressing) was his message, “This new age of enlightened understanding recognizes that developmentally disabled persons have a great potential for achieving and overcoming handicaps…Research has uncovered the genetic basis for the condition and points the way to its ultimate prevention.”  Points the way to its ultimate prevention?  You see, maybe I am naive and ignorant, but it still shocks me to find out that so many choose to abort their unborn babies who have been diagnosed with Down syndrome. 

For those who have read our story, you know where we are coming from and why we personally wouldn’t consider aborting our baby for being diagnosed with Down syndrome. I am also pretty sure I couldn’t abort my baby for any medical reason, no matter what the doctors say. Not necessarily for religious reasons, but I could never forgive myself for taking such a decision into my own hands. Because what if the doctors are wrong?  Just too many “what if’s” that I just wouldn’t be strong enough to go through with it unless it happened naturally. 

So if we had Luke decades ago, I probably would have faced some strong controversy with this view.  I wonder if society would change its viewpoint on people with disabilities if we grew up in a society where they were treated as equals instead of being treated differently and tucked away in institutions.  Would we become a society that didn’t have such a high percent of pregnancies with a Down syndrome diagnosis being aborted?  I have read that other countries who have more positive perceptions of people with disabilities also have lower rates of abortion for pregnancies with Down syndrome diagnoses. 

Can that happen here in the United States?  I certainly hope so. And like the writer whom I reference above, I too believe we have yet to see the true potential of people who happen to have Down syndrome. And I’m hoping with more awareness and acceptance, I’m hoping that one day we will see a greatly reduced percent of abortions of pregnancies with a Down syndrome diagnosis. Not because of any kind of legislation (besides sharing accurate and up to date information and contact info for support groups at prenatal diagnoses, which I think should be a given), but because people truly want their babies with Down syndrome because it won’t be seen as such a negative diagnosis anymore. 

31 for 21: A Unique Experience on a Prenatal Diagnosis

Since we knew that our baby had a 99% chance to have Down Syndrome when I was 15 weeks pregnant, we had a long time to adjust and deal with the news. I did cry the first day we found out and fretted for a couple days as I started to educate myself.  The main concern I had was the health of my child, and I did everything I could possible to give him the best chance of being born healthy, which made me healthy as well. So although some would think that knowing about his diagnosis would cause a lot of distress, worry and uncertainty, I actually found that I enjoyed my pregnancy with Luke more than with my first son.  In fact, my pregnancy with Luke was pleasant, despite the challenges we faced during my pregnancy and his diagnosis.  I hope others have positive experiences about their prenatal diagnosis and pregnancies and choose to share their stories as well.

Knowing his diagnosis allowed us to grieve whatever expectations we had for our child as well as educate ourselves on what it would mean to have a child with Down syndrome, which I came to realize is not that different than expecting a typical child in my perspective. Then we could celebrate and prepare for his birth.

It also helped to pay a visit to Gigi’s Playhouse, where I met other moms with babies and toddlers with Down syndrome. I met and talked with other moms and their children. What I came away with most was that all of their moms adored their children and you could see their love and pride in their eyes. I noticed that these children were just like any other kids their ages, and all seemed very happy while engaged in play with others.  Yes, most of these children were developmentally delayed but most would reach typical milestones, just a little longer than what is standard.  Some also underwent surgeries related to their heart or digestive systems, but all were successful and their children were thriving now.  So I knew that no matter what challenges would come, that we could address and deal with it as others have before us.  All of this gave me hope and made me relieved that everything would work out.

Even though I had a difficult pregnancy, I enjoyed my doctors visits so that I could see my baby’s ultrasound and hear his heartbeat. I think all of those ultrasounds made me bond with my baby before he was born and I enjoyed every opportunity I could see him move his arms and legs and see his adorable profile. I recall that he would have frequent hiccups and I would caress my belly as if I could comfort him that way. I loved watching my belly shake with every hiccup, even though I had read that it may be a symptom of reflux (which he does have). But it made him seem so alive.  All I wanted was for him to be happy and healthy.

So my efforts focused on having a healthy pregnancy. I already have a myriad of issues on top of being an older mom, so I was fortunate enough to have wonderful ongoing care (biweekly to bimonthly through my reproductive immunologist) and that helped put my mind and worry at ease.  I focused on eating well, doing acupuncture 1-2 weekly (also helped with morning sickness), taking many vitamins and supplements (including baby aspirin, fish oil and vitamin e as part of the RI treatment to improve blood flow to the baby), and being on bed rest for the first 2 trimesters due to bleeding in the first trimester. All this helped me to feel better and feeling like I was doing everything I could to have a healthy pregnancy and baby.

There is a theory out there that some of the health related complications and some unique traits (like low set ears) with Down Syndrome are due to organs not being fully developed due to poor blood flow to the baby. I don’t know how much truth is in this theory, but I feel like the attention spent on good blood flow to the uterus during my pregnancy was helpful in ensuring that Luke would be in good health.  During one of my visits, I was told that there are 2 arteries and 1 vein to carry blood to and from the uterus in typical pregnancies, but that in some pregnancies where the child has Down syndrome, there is only 1 artery to the uterus, which can cause less blood flow to the baby. In my ultrasounds (and I had a ton!), they confirmed that I had 2 arteries to the uterus.  Dr. Kwak-Kim’s office also checked the rate of blood flow to the uterus and would alter treatment if the flow wasn’t enough. So I think that my treatment and care is the reason why our baby is healthy today. Given that I am a type 1 diabetic and I have Hashimoto’s thyroiditis, and Luke has had no health issues with his heart (more common in children with Down syndrome and mothers who are diabetic), digestive tract, thyroid or anything else but reflux, seems like a miracle to me.

So while I don’t think prenatal testing is for everyone, for me I’m glad I did it because it helped me adjust to the diagnosis, focus my efforts to have a healthy pregnancy and baby, all so that we could celebrate the birth of a very beautiful baby boy.  I don’t think it is for everyone though, as I think many people would stress out about it. If in a difficult position regarding termination, I also urge you to take some time before making any kind of decision and to listen to your heart, and be wary of doctor’s opinions, especially if they are negative. I believe that many moms who make that difficult decision live to regret it. I wonder if any of the moms who look at Luke with sadness or are uncomfortable (I’ve witnessed it a few times), were one of those moms who made a decision they later regretted.  So I just caution anyone faced with this difficult predicament, as it is not easy to forgive yourself should you have regrets and it is not a decision that can be reversed.

I wish we lived in a world where “I’m sorry” is replaced with “Congratulations!” when being told about a baby having Down Syndrome because we have found our lives so much better and enriched because of Luke, and we know of many families that share this sentiment.  Maybe if that was the case, there would be less cases about aborting pregnancies that carry this diagnosis.  Really the diagnosis itself is nothing to fear and Luke has been such a joy in our lives, so much so that the contrast to some people’s reactions is so stark in comparison because no one should pity us for having such a beautiful and sweet child.

Whenever I introduce him, I tell people he has Down Syndrome, is doing great and we adore him before they have a chance to express any feelings or sentiments of pity because there is no need for any.  Honestly, it has worked well pretty much every time and sometimes people are sweet, some share stories of others they know, and some don’t know how to react, but I hope most walk away knowing that there are families out there that don’t feel in any way disadvantaged because they have a child with Down Syndrome.  I feel that Luke will be able to accomplish whatever he sets his mind to do: whether it be to start his own business, live independently, get married, go to college – all accomplishments already achieved by many who have Down Syndrome.

So if you do get a prenatal diagnosis and decide to keep your child (which is a decision I don’t think you will ever regret), I recommend that you talk with others in local support groups, take care of yourself and your baby and do what you can so that you too can celebrate the birth of your child into this world as you have every reason to celebrate just as every other mother who has had a beautiful child.

Leo the Baby with Down Syndrome: Don’t Pity but Fight for Inclusion

Many of you have seen the story about the dad who claims that his wife abandoned their baby when he was born with Down syndrome in Armenia (if you haven’t, you can click here to see it).  It is hard to know the complete story, especially as it is filtered through the media.  Samuel Forrest (the father) has raised almost $0.5M in funds since sharing his story on 1/27, which is quite impressive, but that will also cast doubt on intentions.  I certainly respect Samuel for standing up for his son, but I don’t feel that a father should be rewarded just for doing the right thing.  The funds site does say that some of the funds will go towards supporting children with Down syndrome in Armenia, but I am curious to know how much of the funds they will get.

The positive side to all of this, is the fact that there is so much media attention on this story, and that hopefully, this means there will be more positive awareness about our children with Down syndrome.  However, I am fearful that many who read this story will pity the father and pity the children who have Down syndrome as well.  This kind of perspective is not the kind I want for our child – I want inclusion, not pity.  So I would have also liked to have seen stories with how well children with Down syndrome are doing and how we need to view people with Down syndrome (and disabilities) as not that much different so that we can live in a world of inclusion, not a world where we pity or distance ourselves from those with Down syndrome or the disabled.  I would like articles like this to be viewed along side with the story to help spread awareness (click to view) about quality of life for those living with Down syndrome, including impacts on family life.  And there are so many inspirational stories of those living with Down syndrome that are blowing away stereotypes and limitations (click to view one such article).  Or increasing awareness about prenatal diagnoses with Down syndrome and having better support and giving balanced information when delivering such diagnoses.  This was an opportunity to educate and increase awareness that was missed in my opinion.

I wish people would realize that raising a child with Down syndrome can be very rewarding and that parents who abandon their child (either at birth or prenatally) may miss out on so much joy by not knowing their child.  The message shouldn’t be about attacking the one mother who abandoned her child when so many others have (again at birth or prenatally as there have been numerous cases of both) or the one father who chose to stand by his child.  The message should be why do people abandon their children with Down syndrome (or with a disability) in the first place?  And what do we think about that and what can we do about it?  I also read a story about a surrogate who refused to have an abortion (ultrasounds showed the baby had several defects including a cleft lip) when the birth parents demanded her to do so, even taking legal action to claim the baby as theirs just to turn the baby over to state authorities (click to view that story).  The birth father eventually visited the baby so it seemed to have a happy ending with a family who adopted several children with disabilities adopting her.  But were they rewarded with almost half a million dollars to do that?  No, they weren’t.  They did it because they are caring people and they felt it was the right thing to do.

So why is this story so compelling?  Because it was the father who stood by the child?  Because the child has Down syndrome?  Because the mother apparently abandoned her son and filed for divorce (the 2 sides differ on the facts surrounding this too)?  All of the above?  I’m not criticizing anyone who donated to the Forrest family, not at all.  I think compassion is one of the most powerful human emotions that differentiates man from beast.  I’m just wondering why this story is so compelling versus the others I have read where the mother won’t give up on her child but the father abandons them or something similar.

On a side note, the father set up a funds site to ask for money so that he could stay home with the baby for a year (they will get free healthcare in New Zealand).  But the skeptic in me makes me wonder how the money will be spent, although it sounds like he has hired people to help him figure out what to do with the funds.  I just feel that at some point, they should have shut the funds site down when they reached their goal and encouraged others to donate to research for Down syndrome, support groups or another related worthy cause.  Or say that over a certain dollar amount, the remainder will go to charities (some will go to Armenia to support children with Down syndrome which is good).  For $0.5M, it was too nebulous on how it was going to be spent to make me feel comfortable that it was going to be well spent.  Hopefully, they will do the right thing and donate the majority to help others and take only what is needed for Leo (the original request was for $60k).  In principal, I just find it unethical to benefit on his behalf.  I’m sure Samuel Forrest didn’t expect this kind of out pour of support.  I just hope he does the right thing with it and chooses to make a difference in the lives of others.  So if you have an urge to donate, please choose a Down syndrome group to donate to (see Resources for some sites to donate to).

But going back to the original point.  Cultures are very different around the world, but there seems to a common stigma of having a child with a disability and tends to carry a sense of fear, pity or shame with it.  Why is that and how do we change that?  I recently read a blog that someone shared on Facebook that got me thinking about this (click here to view it).  They brought up the fact that many advanced countries have high abortion rates for prenatal diagnoses for Down syndrome (the post said New Zealand’s rate is 55% and ours is much higher), and that abortion for this reason is prenatal abandonment similar to what has happened to baby Leo by his own mother.  Now, I think that kind of a blanket statement may be a little unfair as each circumstance is different, but I definitely see his point.  But would people be more willing to keep their child with Down syndrome if there wasn’t such a stigma carried with it?  It seems that in Armenia, the stigma is so strong that 98% of people abandon their baby at birth, which is legal there.  If the stigma was gone and they also had free healthcare, would that mean they would more likely keep their babies with Down syndrome?

There are probably some cases out there where the decision is made based on severe birth defects and not wanting their child to suffer, they choose to terminate.  But I argue this in a previous post that many children with Down syndrome have happy and fulfilling lives and are a blessing to their parents.  Also, many birth defects identified prenatally or at birth can be rectified through surgery.  So decisions made by parents who are not aware of this, may think they are saving themselves and their unborn child from a life of suffering, when they are potentially depriving themselves and their unborn child a life full of happy memories and much joy.  However, I know that there is so much uncertainty for those in the difficult position to make a decision about whether to terminate or not.  And with uncertainty, there usually is fear.  But I just want people to know that the outcome can be very rewarding and lead to happy lives as well.  To make the best choice for themselves, people need to be aware of the positives too.

The blog post also talks about having to break down the culture of abandonment (including abortions for prenatal diagnoses of Down syndrome) in order to have inclusion for our children with Down syndrome.  This is an interesting perspective.  Will our child with Down syndrome be truly accepted if someone looks at him or her and thinks, if I had the choice, I would never have had allowed him or her to come into the world?  Because other than the very difficult cases where chances of survival are slim, is termination based on prenatal diagnoses of Down syndrome somewhat similar to what the mother in Armenia is accused of doing?  In addition, she said (to her defense) that they don’t have healthcare or support for children with Down syndrome in Armenia.  So what does that mean in countries where there are such support programs and excellent healthcare?

Now I know that the two are not truly comparable.  People see pictures of Leo and see how cute and adorable he is.  An ultrasound picture is not as endearing.  It is harder to relate to a black and white picture of a peanut with limbs than an adorable baby with chubby cheeks.  There is also the debate on when life starts and some don’t believe that life starts until a baby is born.  It’s not a perspective that I agree with, but I can respect that the opinion exists.  Some mothers bond with their baby while they are pregnant and others it’s not until they hold their baby in their arms and for others, it may take even longer.  I happen to be the mother who bonds with their baby while pregnant so that shapes my opinion as well as having a son with Down syndrome.  It also is not easy to have a child with a disability and it comes with unique challenges that some people don’t feel they are able to handle.  However, when you have a child with Down syndrome, you tend to see the smiles, hear the laughs, feel their kisses and hugs, and not see the disability in your child.  But you know yourself best and know what kind of parent you are and could be.  Just don’t sell yourself short.  You would be amazed about how strong you are and what a better person you are for it.

I wish we could give a crystal ball to every person who has a prenatal diagnosis of Down syndrome so that they could see their child grown up and see how much they love their child.  Or even better, to physically hold their baby and get to bond with and feel how precious their child is, before making their decision to terminate.  Time and time again, I hear stories about parents who were scared of having a child with Down syndrome only to say later on, “if only I knew there was nothing to be afraid of” and that they would love their child and see them as a gift rather than a burden.  Yes, along with the “Kiwi” down under, I also hope that we will have a world of inclusion because this would mean that the stigma of Down syndrome would be less (ideally non-existent) and that would mean a better world for our children to grow up in.

Why Life was the Only Choice for Us: Supporting others with a Difficult Decision

THE GIFT OF LIFE: OUR JOURNEY

I know that there has been talk recently about the gift of life.  There was a meeting in DC about this in mid-January and it’s been on my mind lately.  I know this is an extremely sensitive and controversial topic.  In fact, it’s been difficult writing this as well as gathering up the courage to post this.  So please know that I mean no harm or insult with this post.  I’m just trying to put forth a perspective, and hopefully give some people food for thought, especially for anyone faced with the emotionally charged decision of keeping their child or looking for comfort after receiving a prenatal diagnosis.

If you had a chance to read our birth story (click here to view), then you know that for us, there was no choice to make.  For me, the second I saw the second line on the pregnancy test, I had already accepted the baby that was starting to grow inside me as ours.  And every ultrasound there after, I further bonded with him – every heartbeat, every kick, every hiccup I felt.  The prenatal diagnosis of Down syndrome that we received when I was 13 weeks pregnant was tough to accept, but that never changed the fact that he was our baby.  But I know that not everyone may feel that way.

I have a loving husband, an incredible 6 year old (who was then 5), and we have a loving little family.  So I knew that we had the love and support to overcome any challenge we would face.  I had also endured a couple of miscarriages right before Luke, so I felt that this baby was meant to be ours, extra chromosome and all 🙂  That didn’t make me less worried or sad about the diagnosis.  We were sad, but that didn’t change the way we felt about our child.  Reaching out to Gigi’s Playhouse (click here to view their site), also helped us a lot.  To see other parents with their children with Down syndrome playing with other children and their siblings made me realize that our child will be like any other child, he just may take a little longer to reach certain milestones.  After talking with other moms whose children had heart surgeries or other complications, I realized that although these women endured tough ordeals, they cherished their children and appreciated every milestone they achieved.  That day, I realized that there was no reason to be afraid, worried yes, as is expected in motherhood.  But I knew then that I would not be alone in this journey ahead.

A DIFFICULT DECISION

For others, they may feel afraid of what is to come and have a lack of support, so the decision may not be that easy.  They may be young and scared, with little support.  Or have an unsupportive husband or family or have little exposure to people with Down syndrome, fueling fears potentially already propagated with the news of the diagnosis.  Or they may have had a bad experience with doctors or other medical personnel that gave them the impression that the “quality of life” their unborn child would have would be poor and that having a child with Down syndrome is extremely difficult and they are not strong enough.  Or perhaps they have identified defects in the heart or digestive tract or some other complication that scares them into thinking that their child would suffer or live in fear that they would get attached to their child only to have their child be taken away from them.  Or for whatever reasons they may have, maybe they are wondering if keeping their baby is the right thing for them, for their baby, for their family.  For all these reasons and more, I try not to judge what people are going through.  It is scary and uncertainty is the worst when one is already overrun with hormones and anxiety.

But that all said, I want to share with you some perspectives to mull over if you are faced with this difficult scenario.  When I first found out our baby was very likely going to have Down syndrome, I scoured the web and read facts about Down syndrome, shocked by the high percentages of people who decided to terminate after a diagnosis, then I came across a story that haunted me.  It was written by a woman who had received a prenatal diagnosis by amnio rather late in the pregnancy.  She and her husband decided to terminate based on the “quality of life” argument.  She delivered a baby boy around 22-23 weeks (don’t quote me as I’m recalling this from memory) and was shocked to see how perfect this baby was who had only lived a very short while.  He looked like her husband and had perfect little features.  Afterwards, she suffered through anxiety and depression with thoughts of death and nightmares plaguing her.  She regretted her decision and it haunted her immensely.  I couldn’t find the story again, as I suspect she deleted her post likely due to either pain or possibly cruel comments (it was difficult to read and the raw emotions was quite evident).  While searching, I did find this story a brave woman shared (click to view), who also has trouble forgiving herself for her decision of terminating her pregnancy with phantom kicks and a failed relationship as part of the aftermath.  For many mothers, it is very difficult to give up a child and many have a hard time forgiving themselves for making such a choice, especially once you start bonding with that child and making preparations to bring that child into the world.  To mentally make a shift like that will undoubtedly have an emotional toll that many find difficult to overcome.

A DIFFERENT WAY OF LOOKING AT THE DIAGNOSIS

I think that many feel that the hard decision to make is to keep a baby with Down syndrome due to his or her disability, which isn’t easy but whenever is a mother’s life easy?  But thinking of terminating was unthinkable for us and it would have been so very difficult, if not impossible, for us to actively give up on our baby.  That was our personal experience and opinion, and I didn’t consider whether that was the case for many parents.  However, I came across this and thought it was an interesting perspective (click to view).  A mother was asked whether it was hard to make the choice to raise a child with a disability (Down syndrome) and she said that the choice to not be there for her child was harder.  I think that is very insightful, and is one perspective that I share.  Not everyone may feel this way, especially if they, or a close loved one, had a bad experience with a disability, causing them to fear what the life of their unborn child would be like.  Or are just ignorant about Down syndrome and assume the worst.  Or whatever their reason may be.  But there are so many support groups and resources such as Early Intervention (and I believe most states have programs to cover or assist with health insurance) that make it easier to raise a child with Down syndrome as well as others who want to raise a child born with Down syndrome.  Please know that there are options and support out there if you need it.  Just remember that if you are thinking of terminating, you may always wonder what would life be like had you made the other choice.  Life is full of difficult decisions and it’s these decisions who define who you are.

What I’m trying to say is that I have never met a woman who regretted keeping her child.  But I have read stories of women who have regretted terminating their pregnancy after receiving a prenatal diagnosis.  That kind of decision cannot be undone.  Whereas, if you give your child up for adoption, you may still have an opportunity to know that child or person later in life.  So although you may still regret giving up your child, there is an opportunity to get to know your biological child later in life should you want to.  If you want to give your child with Down syndrome up for adoption, there is a registry for people wanting to adopt a child with down syndrome.  See Resources to find out more about adoption of children with Down syndrome (click to view).

The intent of this post is not to guilt someone in keeping their child.  Again, you know what is best for you and your family.  However, terminating a pregnancy willfully is an enormous emotional burden that you must prepare yourself for.  So if your mind is made up and you know that terminating is the right decision for you, then I am just trying to advise you to prepare yourself as once the deed is done, it cannot be undone.  But if you are uncertain, afraid and want some support by hearing other people’s stories and perspectives, then I hope you find all this helpful.

This is not meant to be a Pro-Life or Pro-Choice debate.  Right now, I’m talking about women who receive a prenatal diagnosis of Down syndrome.  Usually, if you have gotten to the point of doing this level of prenatal testing, you are wanting a baby.  The question for you is do you want a baby with Down syndrome?  I can’t answer that for you, only you can.  I can’t promise you that your life will be easy if you choose to keep your child.  I can only give you our perspective and thoughts.  For those who are Pro-Life, I also want them to know that they don’t need to be afraid.  Even though they may be keeping the baby due to their religious beliefs, that they too may wonder what life will be like for their child and their family.  They also need support so that they can look forward to the birth of their child.

QUALITY OF LIFE ARGUMENT

There are many people out there who bring up the “quality of life” issue regarding children born with Down syndrome.  Some may be valid points, such as the risk of heart defects, but these can be treated with surgery usually and some smaller holes heal on its own without requiring the need for surgery.  You won’t know that for certain until birth in most cases.  Even if a major heart defect is identified prenatally, I have heard some stories with happy endings (click here to view one which also discusses medical prejudice on organ donation for the disabled) as well as some stories that have not ended as well.  But so many families who have children with Down syndrome have happy outcomes.  If you want to read some of these stories, the Lejeune Foundation has recently started a site called Stories of Love and Hope (click here to view).  If anyone wants to share their stories, you can email them at mbradford@lejeuneusa.com with your stories and pictures so you can help others who are looking for guidance and support.

I am one who both respects but questions (and can be sometimes skeptical) of medical professionals.  Not because I have anything against them.  But because they are human, it means they are not infallible and can make mistakes.  Also being human, they are subject to their own opinions and prejudices, which can lead to some serious medical prejudices, and can sometimes result in the difference between life and death (as noted in the heart transplant story above).  Ideally, these medical prejudices should not exist, but the article shows that not too long ago (2011), that this problem still exists.  The kicker for me is that they could not tell that the child featured in the story had a disability until they had done testing, whereas our children with Down syndrome have physical features that give away their disability immediately.  For this reason, I think it makes it harder for people to trust the medical community if and when their child with Down syndrome is denied to be put on an organ donor list or other similar treatment.  However, I think with better education, that hopefully this prejudice will improve and dissolve the archaic “quality of life” argument.  We just want our children to have a fighting fair chance.  In any case, please keep that in mind when your doctors consult you about your child, and know that they are human too and can make mistakes or judgments that may not be in your best interest.  There are many wonderful doctors and hospitals out there too, so hopefully you can find one that understands you, your child and your family’s needs.

Another argument is about the fact that people with Down syndrome will likely develop Alzheimer’s and develop it early due to the fact that the 21st chromosome produces amyloid, which is associated with Alzheimer’s.  However, there are very promising results from a study for a drug to help with memory loss and lessening the production of amyloid (click here to hear more).  I believe and hope that there will be much progress made in this area and hopefully improve the outlook for those with Down syndrome soon.

Besides the health issues, there is the disability question.  I sometimes have difficulty defining “disability” when looking at my own son.  True, he is still only a baby and he has a lot of growing up to do, so perhaps his “disability” will become more pronounced when he gets older.  But I have heard and seen so many people with Down syndrome not let their “disability” slow them down.  Whether that means joining the swim team, playing the violin, doing karate, just hanging out with friends, being an actress on a popular TV show, getting married, what have you, they live life to the fullest.  This is a good article about how accomplished people with Down syndrome can be with the right support and people believing in them (click to view).  Truly, there are no boundaries.

And if you define “quality of life” as reducing overall suffering and by how happy one is, then the results would probably surprise many medical professionals and many others.  An article from 2011 shares results from a survey of over 2k parents and guardians with 79% saying their outlooks on life were more positive due to having a child with Down syndrome (click to view), including positive impacts on their siblings for those who are concerned about the potential “burden” a child with Down syndrome will have on your other children.  Another recent article (click to view) shared statistics that showed positive impacts of having a child with Down syndrome on marriage.  Both articles also refers to a survey published in 2011 that asked 284 individuals over 12 years of age with Down syndrome showed that almost 99% were happy with their lives.  I don’t know if you would ever find that high of a number of any kind of homogenous group.  (Click here to see the survey.)

I can say that from personal experience, we can say that life with Down syndrome can definitely be positive and rewarding.  I can’t resist kissing Luke’s adorable chubby cheeks every day, so his impact on my life is very positive and his smiles bring me such joy that it fills my heart with love.  He is an adorable baby who smiles, coos, and babbles and I love every bit of it.  I also see other babies with Down syndrome whose smile you just can’t resist.  But if one of your fears is not being able to relate to or bond with a child with Down syndrome, I urge you to reach out to other families and organizations so that you can talk to and perhaps meet some of them.  This may be helpful for you to see that many families not only embrace their child with Down syndrome, but that their child makes them laugh and fill their hearts with joy, not pain.  If you choose to keep your child with Down syndrome, you will likely experience that same joy.  Like with any situation, the best way to bond with your child is to spend time with him or her.  The feedings, diaper changes, bath time, play time, any time with your child will fill your life of precious memories.  I think that the best way to bond with anybody is to spend time with that person to create memories that can fill your heart with love and joy.

THOUGHTS ABOUT PRENATAL TESTING

I was 13 weeks pregnant when I received the news that our baby was likely going to have Down syndrome (with 99% accuracy using the Materniti21 test).  Although the genetic counselor we met with said our chances were 81% as we had no other real markers, we still refused the amnio so as not to jeopardize the pregnancy.  We wouldn’t have terminated no matter the results anyway.

There is a lot of debate on whether this kind of testing will eradicate Down syndrome, but I would like to think that is not the case.  I know some mothers who chose not to get the prenatal testing done because they would rather enjoy their pregnancy and felt they wouldn’t terminate regardless anyway.  Some women choose not to do testing because of religious or political beliefs.  Others just knew as a mother that they wouldn’t terminate their pregnancy.  For us, we wanted to know just to prepare ourselves, which it did do.  It gave us a chance to get over the initial shock, research and talk with others.  To ask our questions and consult with the doctors.  Then, when Luke was born, we could focus on enjoying his birth and celebrating his life.  So for that reason, it was helpful to us.  Hopefully, through improved support and balanced information dissemination at the time of diagnosis will also help others open their eyes to what a life with a child with Down syndrome really is like, which is a happy and positive life for many.  Then, perhaps more women will choose not to terminate, and make the “easier choice” of keeping their child.

For others, testing may just result in more heartache because they will stress the entire pregnancy and wonder if they are doing the right thing in keeping their child.  Or they will grieve if they choose to terminate, and perhaps never forgive themselves for making such a choice.  The timing of this testing makes it even more difficult, as the earliest it can be done is at 10 weeks with around 2-3 weeks turnaround time to get the results back.  Then you are asked to get an amnio done to make a decision on whether to terminate or not.  Likely, you are looking at somewhere around 14-16 weeks earliest assuming how quickly appointments are made and labs get results back.  Then, there needs to be time to schedule the termination.  By this time, the baby may be active and you may already feel movements and see defined features in ultrasounds.  Never feel that it is too late to cancel a termination procedure.  If that is what your heart is telling you, then you may regret not listening to it.

I had such a difficult pregnancy, that I was getting ultrasounds done every week since week 5 of my pregnancy so I could see our baby moving and growing inside me.  In the beginning, I just hoped there was a strong heartbeat.  But every time I saw my baby move, kick, wave an arm, my heart would leap for joy.  So for me, even by 13 weeks, I had bonded with my baby.  So you may not feel your baby when you get the initial news and you may not feel bonded yet.  But as your baby grows, you will feel more movements, and with each one, you will likely bond with your baby.  That kind of emotional attachment (I feel that the maternal bond is one of the strongest that exists in the world) is difficult to turn off.  So keep that in mind as you may be surprised that what you felt was a firm decision at first may cause you to question your choice later.  For this reason, I think this test is not well suited for many if the reason they want to take it is to terminate should the results be unfavorable.  Again, this isn’t true for all, as each individual is different and will respond differently based on their own experiences and beliefs, and these women may be great mothers – they just have a different perspective.  But if you know yourself well and have already bonded with your unborn child, then taking this test for purposes of termination (instead of preparation) may not be the right thing for you.

CHANGING THE FACE OF THE DISABLED

I read a blog recently that got me thinking about how society treats the disabled.  Would people be more willing to keep their babies with a disability if society was more supportive and accepting of people with disabilities in general?  Currently there is legislation about terminating pregnancies due to a disability (or gender – click to learn more) and another that works on providing more balanced information about Down syndrome after a prenatal diagnosis (Called Chloe’s Law – click here to for more detail).  I think giving balanced information and support to those with a prenatal diagnosis is a step in the right direction, however, is it enough and does it get at the root cause of the problem?

It posed some interesting questions.  For example, if we were exposed more to the disabled through integrated media (such as #ThisGirlCan – click to watch) or if our children with Down syndrome were fully included in classrooms with their peers was the norm, that we wouldn’t think of people with disabilities as being so different than ourselves.  Gigi’s Playhouse sponsors an annual community event called GigiFest to celebrate Down syndrome awareness month, where people of the community are welcome to play and hang out with people who have Down syndrome.  The hope is that more children will grow up knowing that their peers with Down syndrome can play just as well as the best of them, as well as do just about anything they can do too.  So advocating for your child not only benefits him or her, it will benefit society as well.  For us, I think this is perhaps the most challenging part as this will be a continuous role.  Because I love my child and want a better place for him to grow up in, I will never stop advocating for him.

Perhaps if there was more exposure and positive shared experiences, then maybe we would be more accepting and less judgmental on those who are disabled, which may in turn result in more people who receive such a prenatal diagnosis to keep their babies.  That they wouldn’t be so scared and worried about bringing a child with disabilities into the world.  That a life for someone with Down syndrome (or another disability) is definitely a celebrated life worth living and not one full of suffering, solitude and pain.  A very noble thought and I for one think a world that embraced rather than shunned the disabled would be a better and more loving world indeed.

Our Rainbow baby that is meant to be ours to love and cherish who happens to have an extra chromosome

LUKE IS OUR POT OF GOLD AT THE END OF THE RAINBOW

We already have one boy, Kaden, who is currently 6.  He was a challenging baby who was throwing up 6-8 times a day due to eosinophilic esophagitis, which are allergy cells  in his esophagus, which wasn’t diagnosed until he was 2.  By the time we got the results and saw an allergist, he fortunately outgrew his allergies.  I am a Type 1 diabetic (since 1986) and was 35 at the time Kaden was born, so I was pretty worried throughout the pregnancy and saw a perinatal specialist (high risk ob).  So we waited a bit until Kaden was older before even considering another child.

In the summer of 2012, I found out I was pregnant.  It was a surprise as we weren’t actively trying.  But at 7-8 weeks pregnant, I was diagnosed with a blighted ovum and ended up having a miscarriage a couple weeks later.  Soon after, I was diagnosed with Hashimotos thyroiditis.  Being a type 1 diabetic makes me prone to developing other auto-immune diseases.  Anyway, after being pregnant, I realized that I had wanted another baby really badly, even though I was getting up there in age (currently 40 as I write this) as well as there are some risks to the baby and myself during pregnancy.  So we agreed that we would try to get pregnant until the end of the year.


Almost ended our journey early: turbulent waters ahead

I was scheduled to get an IUD in December of that year, as I hadn’t gotten pregnant yet.  But doing some research made me hesitant about pulling the trigger, so I decided to wait until I talked more with the doctor about it.  Then, in January 2013, I found out I was pregnant!  We were thrilled with the news, but we decided to keep the news to ourselves.  I had strong pregnancy symptoms, which comforted me as they weren’t very strong when I was pregnant that previous summer.  I went to see the perinatal (high risk) specialist due to both being diabetic and my age (currently 40) when I was around 6-7 weeks along.  They found a heartbeat so they told me all looked good and to come back at around 12 weeks.

But then in early March, I felt like the pregnancy symptoms weren’t as strong, so I was worried.  I was worried before then, just because I had previously miscarried.  But they didn’t even run blood tests, which I was surprised as I was at a high risk office.  Even when things looked dire, they didn’t want to run tests.  I went in to see a regular ob/gyn (the first one I could get on a Saturday), and she scanned me.  It turned out that the sac kept growing, but that the baby stopped growing at around 8 weeks of age.  I was devastated. I ended up miscarrying a couple of weeks later.


Looking for answers: Reproductive Immunology

The high risk doctor just said it was bad luck and to try again.  I couldn’t accept that answer, so I researched some more and found that many women with Hashimoto’s have difficulty carrying to term.  I spoke to a therapist and she recommended that I read a book, “Is your Body Baby Friendly, click here to see it on Amazon (although check with your local library first).  The book had all the answers I was looking for.  She also told me she had seen a reproductive immunologist, Dr. Kwak-Kim (who had studied under the author of the book and considered the pioneer of Reproductive Immunology), that happened to have an office in our area at Rosalind Franklin in Vernon Hills, IL.  Reproductive Immunology helps women like myself whose immune systems tend to be over-active during the pregnancy, in short, their bodies attack the pregnancy.  This is a controversial area, but has proven results for women like myself (especially those with autoimmune issues).

There are really only a handful in the nation people tend to go to, so I felt very fortunate to live near 2.  Dr. Kwak-Kim had a 1-2 month wait list, so I couldn’t see her until early May.  The other one was readily available.  So I saw her.  She didn’t do as intensive testing and treatment, and she was further away.  So I decided to continue with Dr. Kwak-Kim and waited for my first appointment in early May.  I was told it would take almost a month to get my results back, so I should return around then.


It’s Amazing what the Body must do to Create a Life

So we went on a family vacation to Florida in late mid-May.  Right before we left, I thought I had some pregnancy symptoms, but the test came back negative.  So I brought a couple of tests with me, just in case.  I got a positive test result while on vacation and called their office right away.  Dr. Kwak-Kim’s office told me to come in right away and made an appointment for me the morning after we got back.  I went in and they found I already had bleeding around the sac at 5 weeks, 0 days.   The test results weren’t back yet and I was not on any kind of treatment plan to help calm my immune system down (some woman can’t even stay pregnant long enough to get a positive test so I’m fortunate there), but they put me on an IV treatment of IVIg right away to calm down my immune system.  Later, I found out that my overactive immune system was physically attacking the pregnancies, confirming my fears.

It’s amazing what the body has to do to create a life, especially considering our bodies will naturally attack any foreign object in our body.  Unfortunately, for some like myself, this naturally occurring lowering of the immune system so that our bodies don’t reject a pregnancy doesn’t happen, and the body sees the baby as a foreign object it must get rid of.  I hadn’t thought about how much our bodies change to accept a growing life.  I had no idea that my autoimmune problems would also cause my body to attack a growing fetus.


But I am so fortunate that I had found Dr. Kwak-Kim, to whom I credit for saving Luke’s life.  I had actually met another woman who went through a similar scenario and got pregnant before her test results came in and was not on any kind of treatment plan (similar to me), except she went in one week later at 6 weeks.  For her, it was too late and even though she also had started the same IVIg treatment, she ended up miscarrying.  In situations like these, timing is critical.  In fact, it is usually advised that patients do not start trying until their test results come back and they are already established on a treatment plan.  But in our case, the fact that we got pregnant when we did and that Dr. Kwak-Kim was able to save our baby, our Luke, makes me feel that this baby is our miracle RAINBOW baby.


They put me on Progesterone-In-Oil shots (boy, do those hurt! try getting it in olive oil though which is less thick than sesame oil), estrogen and progesterone hormone pills and supplements (MTHFR since I’m MTHFR homogeneous and prenatals of course), but they couldn’t put me on the full treatment plan (steroids, vitamin E, fish oil) because of the bleeding.  I was closely monitored twice a week throughout the first trimester and was mainly treated with IVIg IV infusions, which the insurance wouldn’t cover as they considered it experimental.  So we invested $2300 for each infusion, which I had about every 1-2 weeks throughout the first trimester.  But all I wanted was for my baby to be healthy.  I went to an acupuncturist twice weekly and was on bed rest, which is not easy to do with an active 5 year old who is out of school.  Luckily, we found a summer day camp that was full day that he liked, so that decreased the guilt I felt about neglecting him during a difficult pregnancy.


Pre-natal testing: our diagnosis

During this same time, I went back to the perinatal specialist.  I changed doctors initially due to the previous 2 miscarriages, plus this one was referred by the reproductive immunologist board online to support reproductive immunology (not all doctors do as the treatments are sometimes seen as controversial).  I elected to have the Materniti21 test done, which tests placental dna in the mother’s blood for chromosomal anomalies as well as the gender.  It is completely safe as it only requires a simple blood draw from the mother (and I was getting blood drawn every 2 weeks so I was used to it).  I wouldn’t have done it otherwise as I didn’t want to risk the pregnancy.  The test could be taken as early as 10 weeks and could also tell you the gender with pretty high accuracy.  So I did it, wanting to know the gender more than anything else.

The remainder of the ultrasounds, the first trimester screen, including the NT measurements, all looked fine.  I was worried about the bleeding.  I did try the cheaper alternative, intralipids ($60 versus $2300 per treatment) via IV administered by a fertility specialist I had also seen, once and it increased the bleeding area by 2-3 times the size.  So I stopped that immediately and never went back for another treatment, although I know it has worked for other women.  But for me, it had disastrous effects, maybe because I was already bleeding.  In any case, I was going in for weekly ultrasounds and it looked like the bleeding was getting better with the IVIg treatments, money well spent and probably the sole reason Luke is here today.


When I was around 13 weeks, I was at the reproductive immunologist and the scan showed the bleeding had stopped!  While I was at the office doing another IV infusion, the doctor’s office had called with the results of the Materniti21 test.  He somberly told me that the test had come back positive for trisomy 21 with around 99% accuracy, and he recommended an amnio.  I hadn’t expected the news as the NT measurement was normal, and I didn’t know much about down syndrome.  He pressed that we didn’t have a lot of time to make a decision.  I was completely ignorant about what he meant by that.   All I knew was that I wasn’t going to risk my pregnancy to do an amnio so I declined.  I later realized that he was pressing for time in case we decided to abort, which upset me as that was nothing I had even thought to consider.  He did refer us to a genetic counselor, so we set up a meeting.  We also found out we were having a boy, but the joy of that news was diminished with the other news we received.  After the call, I started to cry.  The nurses at the office were great and so supportive!  One of them told me about Gigi’s Playhouse and the things she said gave me hope that it may not be as bad as I feared.


The next couple days were rough as both my husband and I processed the information.  I started to do a ton of research online and also called the company who administers the Materniti21 test as it was fairly new.  My insurance company just started to cover it – pretty sure we wouldn’t have gotten the test had they not covered it.  It was very technical, but the bottom line was that it was fairly accurate.  Not 100% as it was possible the fetal dna could develop differently than the placenta (placental mosaicism) or if there was a twin that had died in the womb, but I knew that latter was not the case.  I cried and felt devastated again.  My husband took it pretty hard initially as well, but he is my rock and I know I can count on him for anything that should come our way.  I am so fortunate to have him, and love him and our children so dearly.  We are so lucky to have a wonderful, loving family.  After the initial research and shock, we knew that this was our child and that a diagnosis was not going to change that or affect our love for him.


In fact, we were shocked to hear that the % of people who choose to abort was so high (some sites quote as high as 92%, others 67-85%) after confirming a down syndrome diagnosis with an amnio.  To us, the journey had already been so hard, that the timing was too perfect (if I went in to see that doctor any later, I probably would have miscarried) that we felt that this baby was meant to be ours.  The thought of aborting never crossed either of our minds, not for religious reasons, but for the simple fact that we already felt connected to our baby and knew this baby was ours.  I don’t want to judge anyone for their decision, this post is not about that.  But I just was surprised that the number was that high.  In any case, it is not an easy diagnosis to hear about your unborn child.  One of the reasons I wanted to blog was to share our stories to anyone going through a similar situation, regardless of their decision.  Every circumstance, person, support system, viewpoints are so different.  But if our story helps anyone in the smallest way, then I am so very glad to be doing this.


We met with the genetic counselor and she was very helpful.  She gave us an approximate 81% chance that our son would have down syndrome as we didn’t have any other strong markers and there have been real world false positives.  She gave us the standard printouts of risks, etc. and also mentioned places like Gigi’s Playhouse and Ups for Downs.  I actually went to Gigi’s Playhouse and met some mothers and some babies and toddlers.  That helped tremendously.  I realized that these children were happy, precious and doing well.  I was told that children would still reach their milestones, but that it would just take them longer.  Knowing this helped reassure me and prepare me to intervene early.


The rest of the pregnancy was full of mixed emotions.  I continued to do acupuncture throughout, weekly to biweekly visits to the doctor, steroid shots and other supplements to help quiet my immune system, and restarted IV therapy again in the third trimester when my immune system started to act up again, which is very typical.  But every scan, I looked and asked if there were any signs – something definite to tell me that he would have down syndrome or not.  We did a level 2 and heart echo (twice) and the results came back normal.  So the doctor just said to focus on the 19% chance, but I felt guilty doing that.  I told myself I just wanted him to be healthy, but I do admit that I search for clues every time we did a scan, and even hoped that maybe there was a chance we would fall in that 19%.  The only thing that stood out was a calcium deposit in the heart (soft marker and more common in people of Asian descent – I’m Asian, my husband is Caucasian) and slightly shorter limbs (again more typical in Asians).  So nothing stood out.  Even in the 3D ultrasounds, our baby looked perfect, and he is.


Luke is born!

The winter in which Luke was born was brutal.  The first 2 days of school for Kaden were closed due to extreme wind chills.  For Kaden, it was a completely new school as he was switching private schools to help minimize our commute.  Kaden is quite gifted and excels in math especially, so we have to drive him to a private school for gifted children.  He was going to a school 30 minutes away, but he was just accepted into a school much closer by in which he had previously been rejected.  So on Kaden’s second day at his new school, Kaden wakes up at 3am with night terrors.  Since I’m too big to sleep in his twin bed with a bed rail (which is what we used to do as he would want to sleep with one of us), my husband slept in his twin bed and Kaden crawled into bed with me.  Not even an hour later, I start having contractions.  They aren’t horrible so I breath through them until 7am when Kaden finally wakes up.  I get my husband, pack up, take Kaden to school and drive straight to the hospital.

Upon arriving at the hospital, they did non-stress tests and even though nothing was a huge red flag, they decided to proceed with a c-section.  So at 11:31am on 1/9/14, Luke was born.  He weighed 7 lbs. and 10 oz. and 19 inches long.  When I first saw Luke, I knew he had down syndrome.  It didn’t make me happy or sad, just kind of a statement of fact, perhaps slightly disappointed, but nothing more.  I was a bit loopy with the epidural so I was very out of it.  Plus, they gave me some strong medication to help with extreme nausea (I almost pass out around blood or extreme pain), which made me even more loopy.  I was more concerned about his health, although I could hear him doing well.  His Apgar score was a 9, and he had strong lungs.  Hearing him cry was a wonderful sound to me. They took him away while they cleaned and sewed me up.  I passed out for a little while.


In the recovery room, I held him for the first time.  I remember thinking that he was such a beautiful baby.  He had such big beautiful eyes and such chubby cheeks – I could just nibble them.  That and his feet.  I love baby feet – they are just so cute!  He wouldn’t latch on for feeding.  So they gave him some formula.  After giving him a bottle of formula, he turned slightly blue or “dusky,” so they took him away for a little bit.  Still, he was doing wonderfully and he never even had to step into the NICU.  His heart echo came back with 2 very small holes (PDA and PFO) that they expected to close before he was one, so they told us his heart echo was normal.  Not even a murmur.  Everything else looked good and they declared him perfectly healthy.  We considered ourselves very lucky, and I feel that my intensive prenatal care hugely contributed to him being so healthy, especially given all my health risks.


After all the standard tests, including a look over by the genetics team, we got to go home 5 days later.  I’m glad we knew about his down syndrome beforehand as it allowed us to enjoy his birth more.  By that time, I had read all the risk %s and worrisome stories of needing surgery, complications, etc.  But none of that mattered when Luke was in my arms.  I read somewhere that in hardly any other circumstance, does someone give you a pamphlet telling you that your baby will have a X% chance of a heart defect, Y% chance of hearing loss, digestive blockage, etc. than when you are given the diagnosis of down syndrome.  That made me realize that the statistics didn’t matter.  I only concentrated on what was relevant to us, to Luke.  I also had met a mother who had a son who was born with just 3 chambers in his heart.  He didn’t have down syndrome, but he did have multiple open heart surgeries as a baby.  And other families who had struggles in some fashion or another.  So all of that put the down syndrome diagnosis into perspective, and I consider ourselves lucky to have Luke, with or without that extra chromosome, we would love him the same no matter what.


I’ve included some pictures from day 3 in Luke’s life.  We were fortunate that there was a professional photographer doing sessions at the hospital.  The photographer we had was incredible, taking probably 40-50 shots of Luke with our entire family.  I’ve shared some of my favorites.  I had bought this adorable little fox outfit from Old Navy and Luke looked adorable in it!  If you have an opportunity to have a professional photographer take your baby photos in the hospital, I highly recommend it.  They grow up so fast, and Luke was a terrible sleeper until he was probably 10 months old, so this past year was pretty much a blur.  So I am so glad we got these done when we had the chance.  The photographer was from Bella Baby Photography (www.bellababyphotography.com) and they have locations nationwide.  They do schedule visits to the hospital if you would like to arrange it beforehand.  Anyway, the picture prints are pretty expensive so we just got the cd, which was nicely wrapped in ribbon and delivered before we checked out.  I would inquire about pricing though since I’m not sure if it is more expensive schedule them to come on site as the guy we had was already at the hospital making rounds.


Final Thoughts

I think about the very popular “Welcome to Holland” analogy about finding out about your child’s down syndrome.  In some ways, I can relate, in some others, not so much.  Since we had already had 2 miscarriages right before Luke and bleeding up to the day we were told of his diagnosis, I feel like our story is more like “Welcome to Saturn” after expecting a trip to Mars since it was so difficult for me to stay pregnant that it almost felt impossible at times.  So at least for us, a trip to space is still a trip to space!  So I strongly feel that it is a miracle that Luke is our rainbow baby (a baby after a loss or multiple losses) and very much meant to be our child to love.

Looking back on the past year, I realize that we are very fortunate to have Luke in our lives.  That we wouldn’t change a thing.  I still worry a lot about Luke and his future, but not much more than I did with my older son.  In fact, I think I worried more with my first son as a baby and have enjoyed this pregnancy and baby phase with Luke more.  The benefit of already have gone through the first time motherhood jitters, I think.  The worry is all part of motherhood, but it’s the joy of every smile and the thrill of every accomplishment that I cherish.


I do feel that it is important to share prenatal stories to help those who recently received a similar diagnosis. I actually shared our story to be part of a site dedicated to such a purpose.  Click here to go to their site.  I hope it helps anyone in search of stories and support while they are looking for guidance in their own heart wrenching decisions.


I am glad we got the prenatal testing done.  My husband and I are the kind of people that like to be prepared, which is why I wanted to know the gender so early.  So knowing beforehand allowed us to do our research, talk to others, best prepare for the birth, put most of the fears and anxiety to rest so that we could truly enjoy the birth of our child.  However, the Materniti21 test is a double edged sword.  While it helped us prepare for our child, it may just scare others and may end up resulting in a decision they may regret for the rest of their lives.  For us, I couldn’t see ending a pregnancy we had fought so hard to keep.  Despite that even, I don’t think I could actively choose to abort my own child, regardless of any diagnosis.  I couldn’t know for sure until faced with the decision, but I can be somewhat skeptical of medical advice and tests as none are full proof.


Prenatal tests and doctors opinions cannot replace a mother’s love for her child or her own intuition, which she should trust more than test results.  And if the mother feels hope, she should hang on to that hope.  Without hope, one would be hopeless, which would imply a bleak existence, which is not how we felt.  So we hung on to hope and realized that no matter what comes our way, we would persevere.  Not everyone will feel this way.  But if sharing my story can help just one person going through this difficult debate on whether to keep their child, and if they have hope inside they want to desperately cling to in order for them to swing to the side of keeping their child, then maybe a story like ours can help them.  Sometimes doctors who break these kind of news can do it in an insensitive manner.  Some may persuade for termination due to quality of life.  On that argument, you have to make that assessment on your own – not the doctor. I’m sure that ultrasounds and tests will play a factor, but you have to consider the whole picture.  If you’re concerned on whether your child will have good quality of life, I once saw an article in which 99% of those surveyed who had down syndrome, 99% were happy with their lives.  Don’t ask me but those percentages are pretty high if you were to ask that same question to any group who shared a diagnosis.


Personally, I am pro-choice so this isn’t a political or religious debate.  I believe each person has the right to make their own decisions and know their own circumstances the best.  Someone who was religious thanked me for having Luke, which initially I found odd.  The reason we wanted Luke had nothing to do with religion.  But I understand where they are coming from.


THE REASON FOR MY BLOG

The other reason I wanted to start this blog was to share the wealth of information, tips and stories along the way.  The past year has been so eye opening and I’ve learned so much.  I read another person’s blog, which I found so helpful.  I read some comments and a mother who lives in the Middle East with a baby born with down syndrome had commented that she doesn’t have access to the resources and therapists that we do in the US.  My heart went out to her and she is a huge part of why I started this blog.  I wanted to share what I have learned with others, especially those who do not have access to the same resources we do where down syndrome support groups, clinics (we are fortunate to live quite close to a down syndrome clinic where Luke has already been seen 3 times and due soon for his annual), therapists and doctors.  So as I learn, I hope to share my new knowledge with others.

So I plan on blogging at least weekly with milestones, stories, pictures, videos, and most importantly, tips and resources I have learned along the way.  Just to clarify, I’m doing this because I feel like it’s the right thing to do.  As I write this, there is no monetary gain for making product recommendations, by pasting links to articles or ad tracking.  I am completely new to blogging, so I am just learning as I’m going.


I am making these suggestions because they were helpful to us.  Also, the suggestions I make may not apply to your child.  Every child is different, so you should take the suggestions with a grain of salt and not take it as law.  I came across several blogs from parents with down syndrome, which inspired me to do my own.  But I realized as I bought the toys that were recommended that worked for their child, I found out it didn’t really work as well for Luke.  Luke is more of an observer than a motor-driven child, so I think that helps explain why.  I will talk about that more in the future.  I will also include recommendations that were made by his therapists and try to explain why.  I figure I would try to share the most detail I can so that you can make the best decision for your own child.


I like doing themes to organize my thoughts, so although I may share unrelated tidbits here and there, roughly this will be my plan for the upcoming year:

January: Feeding- Breastmilk, Baby led weaning and Nutrition
February: Therapy- tools, resources and tips to help your child
March: Toys are more than just having fun!  How to get the most use out of Play Time
April: The importance of signing and reading out loud to your child
May: Milestones and what they mean when your child has down syndrome
June: Get up and get active!  Having fun while getting some exercise!
July: Siblings need love too!  This is the birthday month of my older son, Kaden, so it will talk about siblings and feature his interests too as well as how to throw an incredible birthday party, gifted education, etc.
August: Local resources and support groups
September: Healthy hygiene and habits
October: Down Syndrome Awareness month!
November: Getting ready for the holidays – review of making the most of playtime
December: A year in review

I hope that this blog will help people in the same way that others have helped us.

Good luck to you all!

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