EVENT DATE: Sep 21, 2013
STORY OF GABRIELA CICOLINI
Gabriela Dora Cicolini was born on March 8, 2011 at 12:03 AM. She was born 6 lbs 7 oz with exceptional scores of 8 and 9 on her APGAR. This did not surprise us as the pregnancy went very smooth and all pre-screening tests were fine. The only issue we had with Gaby’s birth was that she was delivered quickly, which means her body temperature was a little low and may cause low blood sugar
Shortly after birth, we were woken up by a Doctor that we have never met. She was the NICU Doctor on call. Without much of a lead-in, she informs us that she believes that Gaby has Down syndrome and showing indications of a relatively large heart defect. They were scheduling an echocardiogram in a few hours. At what we thought was a perfect baby an hour ago now appeared to be struggling for her life.
It turned out that she had a few ASDs, which could potentially close up and a large VSD that would likely need surgery within the first few months of her life. We were told that these conditions were fairly common with Downs and the fact that it wasn’t caught before birth was a good thing.
Needless to say, the next few hours were just a family trying to absorb such a shock. No one in our immediate family has been exposed to a child with Downs and had no idea what to expect let alone having to deal with her immediate health concerns.
Later that night, another NICU doctor walked in again to tell us that Gaby was also diagnosed with what they believed was Transient Myeloproliferative Disorder and that her platelet counts dropped below 20,000, which could cause internal bleeding in newborns. We had a brief explanation of the condition, and that the best case scenario was that it was TMD and not full blown leukemia. We would need to have her followed by a Hematologist Oncologist as well. We had real concerns that she would not make it out of the hospital.
Gaby is now just over 2 ½ years old now and her early health concerns have been resolved. She received heart surgery shortly after birth to repair her ASD’s and VSD and the TMD resolved itself a few months later. Once she reaches her 3rd birthday in March, she will have the same odds to get leukemia that most other children have and we will no longer need to be followed by an Oncologist. While the first few months of her life were emotional and challenging for all of our family, we would do it all over again to get this wonderful gift.
Looking back on the situation today, it is sometimes hard to imagine that we ever questioned whether or not our daughter was going to live. She is happy, healthy and by far the best baby I have ever been around. We are very fortunate to have great support from family and friends, as well as access to some of the best hospitals and doctors in the world.
Gaby’s development has been exceptional. She is practically running everywhere and her ability to tackle challenges continues to amaze us and her therapists.
One thing we do know- whatever that little girl has to face, she will take it head on and beat it. She has been an inspiration to us and we believe, in time, she will inspire many others.
This is our family's 3rd walk. We are so excited because this year Gabriela will WALK the walk with us. Please join her and us in our tiny but very strong steps toward great success!