Open Heart Surgery After a Down Syndrome Diagnosis
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.
My name is Amanda and I’d like to share my story about my beautiful Daughter Lilly Lynn. Lilly was born on March 23rd. 2006, it was the happiest day of my entire life. She was placed in the NICU for about a two-week span. Lilly continued to see the pediatric cardiologist, Lilly was always a fighter! Lilly just so happens to have Down Syndrome. I found out “assumed” Lilly had Down syndrome when I was about 20 weeks pregnant (well I was informed that she might have Down syndrome with the heart defect that she had, so I went home and studied everything I could about Down syndrome, and prepared myself to have a baby with Down syndrome.)
In the meantime, we had lots of appointments at Maine medical center in Portland Maine to work with professionals who would be monitoring Lilly’s heart, how she was feeling, telling us what was next.
She was supposed to have open heart surgery when she was 5 months old. Around 1-month-old her little heart couldn’t keep up, she started getting more tired all the time, eating less. At two months old Lilly was struggling, I had to wake her up to feed her every three hours to make sure she was still gaining weight. Lilly needed her open heart surgery to fix her atrial ventricular canal defect when she was 3 months old.
By the time 2.5 months came around Lilly would turn blue, purple while eating, her heart couldn’t keep up, they took her in early. Put her on a feeding tube so she didn’t have to work so hard. I was always kept in the loop, I had a notebook that I wrote questions in, asked them every time I went in, I didn’t take “I don’t know.” as an answer I would always say, “Then who can tell me?”
On June 20th, 2006 it was surgery day. I was actually relieved that the surgery was sooner, it was so hard to watch her suffer, and turn blue. Her quality of life was so sad and scary.
The open heart surgery was six hours long, can you imagine doing open heart surgery for six hours, on a three-month-old?
Dr. Quinn is amazing! He emerges from the door after six hours and says Lilly is all fixed, the surgery went great, but fair warning she looks rough in the ICU. They put her in a medically induced for a bit so she doesn’t hurt herself. I’m posting a picture of what I walked into…….rough is a nice description! At the time it was so crazy to walk into my child laying out on a bed, with lots of beeping going on. Was this scarier than her turning blue? After a few hours of sitting with her I took a picture, one that at the time seems like I would never want another memory of this moment..but now looking back I’m so glad I have this milestone photo.
Lilly stayed in the hospital for two and half weeks after surgery, she stayed in the Barbara bush unit! The nurses and doctors were so good to her! They told me how to pick her up, the proper way to hold her, and what was the best way snuggle my bundle of joy!
Lilly has had lots of follow up appointments for her heart, every single appointment they tell me how great her heart looks, the repair was done flawlessly, we also keep Lilly active with sports and activities, and a high protein, veggies, and fruits diet to make sure we keep her heart healthy!
Lilly is 11 years old now, she is as spicy as ever! Today Lilly has never been stronger, healthier and happier. All of this could not be possible without her open heart surgery. She’s the sunshine in my day! She isn’t afraid to stand up for herself, bring people together. Follow and break the rules! She’s the funniest person I know. She’s not afraid of anything. I’ll keep her safe and she keeps me young. she will always be my baby as she is an only child and always will be. we live in the great state of New Hampshire, we could imagine living anywhere else!
Amanda is a 34-year-old mother living in New Hampshire. She is a hairstylist and loves her job. When not making others beautiful you can find her kayaking, hiking, and baking (not neccisarily in that order) Amanda also enjoys quality time with friends and family and you can follow her on instagram @Amanda_myreis
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