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 firstname.lastname@example.org 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.