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!

15-Ptho0111Kestler-16 01-Ptho0111Kestler-2 06-Ptho0111Kestler-7 05-Ptho0111Kestler-6

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