Real life Down Syndrome Awareness
Hearing that your baby’s heart does not appear to be functioning well is scary, learning that your child has Down Syndrome can be terrifying, but nothing compares to handing your child to a team of surgeons when your child needs open heart surgery after a Down Syndrome diagnosis.
Each parent who shares their personal story on this site does so in the hopes that another parent coming after them can find comfort, encouragement, hope, and a sense of community. It is by the sharing of what we go through that we can encourage so many others. This is one family’s journey through Tetrology of Fallot and Open heart surgery.
No parent wants to hear that there is something “wrong” with your child. At almost 14 weeks pregnant with baby number two, a 26-year-old me was told that there was something “wrong” with the ultrasound of my child. A blood test confirmed that our son has Trisomy 21, also known as Down Syndrome. About a month later we were told that there was something “wrong” with his heart. We knew that 50% of babies with Down Syndrome are born with a heart defect, but it was still not easy to hear this news. Especially when it begins our journey with a congenital heart defect,
A trip to the recommended cardiologist’s office confirmed that our son has Tetralogy of Fallot. This basically means his heart had four specific defects, which I won’t go into details about. It was concluded that he would need open heart surgery. What wasn’t specified was whether it would be immediately after he was born or a few months later, no later than 6 months. This is a scary thought for any parent. However, it is important to remember that medicine has come a long way and although the thought of our little ones going through such a major surgery like that is painful, our kids deserve a fighting chance in this world. Thanks to new technology and a better understanding of the human heart and its functions, many heart defects are correctable. The life expectancy of a person with Down Syndrome has increased significantly in the last century. In the 1930s the average was about 9 years old. In 2007 it was 47. Today, the average life expectancy is 60! I believe that a lot of this can be attributed to modern medicine.
Leo had his heart surgery almost two years ago. We were fortunate enough to be able to wait three months after he was born to have the surgery. However, those first three months of his life felt like walking on egg shells. I was loving all the beautiful memories that we were making, but every step we took consisted of holding our breaths and hoping that we didn’t step on a shell. We were so careful these first months, trying to avoid a “blue spell”, which would land us in the hospital. We wanted him to grow as much as he could in order to give him the best chance when he went in for his surgery. I will be honest and say that it is still difficult to remember the events leading up to the surgery as well as his recovery in the hospital. There were definite setbacks, some minor ones and some that were very painful to witness, including having to reintubate due to a collapsed lung. I won’t go into more specific details. I do wish to offer some advice to any parent who has been given the news, either prenatal or after birth, that their child has a heart defect.
For starters, make sure you find a pediatric cardiologist who you feel comfortable with. In the future it will be important that your kid have a good relationship with their doctor too, but this will most likely start with you. At our appointment with the cardiologist I met two angels. One was the tech who did the sonogram. He made me feel like I could actually pull off being a good mother to my kids. The other angel was the doctor. She is the one that made this bad situation seem like it was good news. She said it was the best of the Tetralogy cases she had seen. I kept wanting to say, “You mean less bad,” but I went along with her mentality. I could tell that she would speak to us with re-assuring words in order to minimize the stress we were feeling. She knew that this was important, not just for us, but for our baby. I will not lie, there were appointments where she was blunt with the reality of the outcomes, but for the most part she made me realize that it was not the end of the world. When you hear that something is “wrong” with your child and you, yourself, cannot fix it, it can be demoralizing. The cardiologist reminded us that we were strong and wonderful parents, which was nice to hear after feeling like there was nothing we could do for our baby. For me, I think it is so important to surround yourself with people who will fill you with positive thoughts while you venture on this path, especially the doctors taking care of you and your child.
The second advice I would like to give pertains to the time during and after the surgery. Give your kids more credit. I can’t even describe what a champ my son had been through the entire pre-op and post-op processes. He exceeded all my expectations, which made me feel a little silly for thinking any less of him. These kids that find themselves with an open-heart surgery are so much stronger than we think. They are truly heart warriors. They are fighters whose bravery is something to look up to. Help them by continuing to hold on to hope that no matter how bleak the situation may seem, things can get better. Realize that it is a major operation, so it is important to find the patience to let them rest so that they can heal properly, even if it takes longer than anticipated.
My last, but certainly not least, advice is to not be afraid to hug or touch your little one while they are recuperating. Seeing them in a hospital bed with tubes sticking out from different places in their body isn’t easy and you may try to tip toe around to prevent anything that might make them move and become uncomfortable. There was a point where I did not touch Leo for a day or two because I didn’t want him to smell me and want breastmilk, which he wasn’t allowed to have yet. I think it was about day three when I broke down. My mother is the one who finally convinced me that touching him and being near him would be worth it. It was impressive how just a simple grasp of his little finger around mine made things take a turn for the better. I felt complete again and he started recuperating faster. We need their touch as much as they need ours. Don’t be afraid to get comfortable in a hospital room setting. The best medication is most definitely a parent’s love, which can come in the form of a small kiss or even asking the nurses and doctors when it will be okay to carry your child.
As I look over the events that occurred a year ago I want to say that things went our way. However, I stop because before we found out about Leo’s heart condition, I would not have pictured any of this as “our way.” Our plan was not to have a baby with Down Syndrome, let alone a baby with a heart condition that would need surgery. That being said, I think it’s important not to look at things as “our way”, but as the best way for us. For whatever reason, God put this beautiful baby boy in our path just the way he is, heart condition and all. He will need future surgery, hopefully minimally invasive, but only time will tell when. The only thing left for us to do is to take care of him to our best ability and continue focusing on the positive aspects instead of dwelling on the negatives or the “what-if” and “if only” scenarios.
My name is Lisi and I am 27 years old. My degree is in Industrial Engineering, but my real job is being a mom to two of the sweetest babies. My family is like the one from ‘My Big Fat Greek Wedding’ only Latin instead of Greek so my chromosomally enhanced Leo has been lucky to have so many people who have loved him even before he was born. You can follow along on Instagram @ourextraluckyworld
Being a first time mom is scary enough, but what about when you are facing a child who has severe heart complications and Down Syndrome? Here is how one mama handled things…
My daughter, Marielle is almost six months old and is my and my boyfriends first and only child.
We had her at CHOP (children’s hospital of Philadelphia). I was originally going to another place closer to where we live, where they told me at about 26 weeks, that my baby’s heart had a defect and that because of that heart defect that she could possibly also have Down syndrome.
Harper was born in August of 2016, 9lbs 14 oz (we have mammoth children and I’ll shock you when I say she was my smallest!). We knew she was our last baby and to keep it extra fun, we thought we’d have a surprise and not find out the gender. I was 90% positive that after 3 boys, we’d have another and hardly entertained the fact that a girl was even possible for us. My husband told me from the start he knew she was a girl. It’s almost annoying how he’s always right!
I knew the moment I met Harper that there was something special and different about her. And I knew she had Down syndrome. I can’t explain it more than by calling it mother’s intuition, but I know that even Keith and I exchanged a glance that confirmed he knew it too. He didn’t know what I knew at the time, but he could feel it. Since having Harper, I’ve heard many other stories where parents knew, even before birth.
Around 60 % of the children born with Down Syndrome also have congenital heart defects. Some of these will close/heal on their own and others will require surgery, either heart catheterization or open heart surgery. A scary situation for any mama to face and one that all to many mamas of babes with Down Syndrome do have to go through. Jess has a beautiful little girl, BerkLee, who is thriving, but that was because she was able to have a heart condition repaired when little Berk was a much smaller gal. Here’s Jess & Berk’s story:
