Olivia’s Small but Big Heart

While pregnant Amanda found out that her sweet baby would have some heart problems and was told that she may have to have surgery soon after birth. When Olivia Rose was born on October 7, the Doctors took her immediately to run tests and do an echocardiogram. Well, as everything turned out, Olivia was doing amazing and didn’t need surgery right away after all even though she was born with Complex Congenital Heart Disease and Heterotaxy Syndrome (RAI) with Asplenia.

Despite the odds stacked against this little fighter she was able to go home about a week after being born. Unfortunately a month into her life Olivia took a slight turn for the worst. She went in for what hopefully would be a straightforward procedure to open her pulmonary artery to allow more blood flow. This procedure turned out to be more complicated when Olivia’s heart stopped. She went into cardiac arrest post-op for 49 minutes before being successfully placed on ECMO (extracorporeal membrane oxygenation) for 3 days. During this time she suffered multiple strokes, seizures, and brain bleeds. After many prayers, and a few days on ECMO Olivia was breathing on her own. After 18 days and many ups and downs Olivia was able to go home again.

Since then, she has been doing pretty well! As her mom puts it, “So far she is totally rocking it! Her playful spirit and loving personality wins over everyone she meets. This girl refuses to be defined by her illness, but instead shows the world all that she can be in spite of it.”

Overcoming the odds, this sweet little girl made it to her first birthday. “Right now we are celebrating her and the beautiful little miracle that she is,” Amanda said. She celebrated in high style with a cake donated by Sugar Angel Angela Steiginga at The Red Star Bakery and Confectionary Company LLC in East Earl, PA. Angela’s beautiful tiered cake featured mint green ruffles, wafer paper flower, and a large gold number 1 for all her guests to see! She also provided a small smash cake covered in pink rosettes for the birthday girl.

In December Olivia will undergo a very risky open heart surgery. Her mom states, “Having an open heart surgery in the middle of RSV/flu season is risky, especially because Olivia has an extremely compromised immune system. Even a small cold has the possibility of taking her life. One thing that could help protect her through it is a series of shots called “Synagis” which protect against RSV. These shots are extremely expensive, costing $5226.28 per shot (5 shots total) and Olivia’s insurance has denied covering her this year, but in an effort to protect our sweet girl as best as we can, we have decided to pay for the shots out of pocket…” As a result, a long time follower of Olivia’s blog teamed up with her mom and graciously started a fundraiser for her.

For future updates on Olivia’s surgery follow her Blog.

To see more of Angela’s beautiful confections, visit her website.