Open Heart Surgery, Down Syndrome and a First Time Mom

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.

The doctor then proceeded to tell us he did not think I should continue coming to their office and that CHOP would be a better fit for my “situation”. Then he asked if I wanted to terminate the pregnancy. This really shocked me because not only did they not give me any type of explanation about the exact defect in the heart and the outcome but we also had not yet confirmed a diagnosis of Down syndrome.

We left that office and never returned and began driving an hour away, just about every week, to go to CHOP where they confirmed my beautiful baby had DS and explained and planned for her heart defect at birth. They sat me in a little conference looking room with four doctors that specialized in her type of heart defect.

I was told it was called a complete balanced AV canal defect. They gave me pictures and videos and pamphlets with all types of info on her specific defect and what exactly they will do to fix it. I had her almost a month early, after which she spent two weeks in the NICU.

At birth, her only issue was that she could barely eat. They placed an NG tube almost immediately after birth. I was told it was due to her heart and it was just too much work for her to eat. My little girl did nothing but sleep for a week. She went home with the NG tube and was a very sleepy baby. At four months of age, her cardiologist scheduled her OHS. The surgery took 6 hours during which they gave us an update on how it was going every hour.

When she got out, her dad and I went to go see her and that’s the very worst part!

Nothing prepares you for that first time seeing them after surgery. But every day they get stronger and happier and get one more machine turned off or medication stopped. They are like small victories to celebrate until the day you can go home! 

It took Marielle a week and a half to recover and come home. It’s been 2 and a half months since her OHS and she’s a happy, active, talkative (baby babble) little girl, who hasn’t needed a feeding tube since a few days after her surgery!!! It’s like someone turned on a switch and she suddenly has so much energy!

The only follow up she needs is a monthly visit to the cardiologist just to see how her heart is doing. She still has to take Lasix but that’s only because of the fluid in her right lung that she acquired during surgery.

Thank you for reading our story and to anyone about to go through this surgery, just know it’s tough but everything your child does from that moment on is a sweet little victory and you have lots and lots to celebrate! Your baby will come out with a brand new chance at life and it’s the greatest gift you could ask for!

Melissa is a 24-year-old first-time mom who works as a bank teller.  Melissa and her boyfriend, Geoffrey, a chef, have one beautiful baby girl blessed with an extra chromosome and the family resides in PA.  You can find Melissa on instagram @melissamosteller_