Sofia Terry

Sofia’s Story

“She is a fighter and that is a good thing!”

Sofia Terry, Trisomy 18, Waynesboro, PA,

Hello! My name is Sonia Rodriguez and I’m the proud parent of Sofia Isabel Terry. She is our 5th child. George and I have 4 teenagers, Miguel-15, Kayla and Jayleen our 13 year old twins and Gabriel-11. We also have a dog named Rico (he is a nut!). Sofia was born by C-section at 37 wks because she had stopped growing. She weighed 3 lbs 14oz and measured 16 inches. When she was born we didn’t know she had Trisomy 18. All we knew was she was tiny and was having difficulty breathing. She was born at a small hospital in Waynesboro, PA and miraculously survived the first night. The next day I went to see her in the nursery and while I was looking at her she stopped breathing. The Dr. came in and provided breaths for her to which she responded well. He immediately call Hershey Children’s Hospital and in 20 min. Sofia was on her way to them via a LifeLion (their helicopter). I was in shock and completely freaked out (sorry for the word). I thought I was having a normal child (all the others were born fine). At this point all I knew was: Sofia has a heart murmur and difficulty breathing. Still had no clue what was about to transpire.

Once Sofia was transferred I requested to be discharged. My husband George called his parents in Ohio to come and take care of our 4 teenagers. They left immediately and where there in four hours. By the time George Sr. and Carol were home we had reached Hershey. We got a room at the Ronald McDonald House (Thanks be to God for their existence) and rushed to the NICU to see Sofia.  Once we arrived the nurse and Dr. taking care of Sofia were the best I could have hoped for. They immediately took us to her bedside and asked us if we knew what was going on. To which we said “No”. Dr. Michaels explained that Sofia’s physical traits were typical of Trisomy 18. “What is that?” I asked. (I have a medical background and had never heard of this). “Trisomy 18 is a genetic disorder in which three copies of chromosome 18 exist instead of two” he explained. “What does that mean?” I asked. “Well, Sofia did not develop properly in utero. Right now we know she is having diffculty breathing because of a heart problem and she is missing a set of ribs”. “Tomorrow, we will have an echo first thing in the morning to look at her heart. The geneticist will also stop by to evaluate her. He will probably want a FISH study to confirm the diagnosis.” At this point I’m bawling and don’t know what to think. Sofia was laying on her crib with a CPAP machine and an IV but otherwise looked great! I couldn’t believe what I was hearing and prayed they were wrong about her. I asked if I could hold her because I had never held her. They were more than accommodating and set me up with a rocking chair so I could sit while I held my precious Thumbelina. She was sooo tiny and fragile. At that moment I would have given anything to save her and spare her all the pain and suffering that she was about to encounter. As the days and weeks went by we found out Sofia has a ventricular septal defect and an atrial septal defect. She also has an eventrated diaphragm and missing a set of ribs. Her genetic testing came back positive for trisomy 18 and we were devastated and heart broken. Sofia kept getting stronger and looking better and better every day. We opted to have G-tube put in when she was 3 weeks old and were expecting to take her home the next week. Then…disaster struck. Sofia had developed an intestinal infection called necrotizing enterocollitis (NEC). This means bacteria were eating away at the intestinal lining. She was put on antibiotics and not allowed to eat for 10 days. Sofia plowed thru this last bump on the road and was sent home at 5 weeks with a G-tube and feeding pump. Life was once again great until 9 day later when she developed difficulty breathing and had to be medevac back to Hershey due to CHF. She spent another 9 weeks in the PICU on a ventilator for 2 weeks and a bunch of cardiac meds.

She was finally discharged on July 27th and has been home ever since. She now weighs 6.5 lbs and measures 19.25 inches. She plays and giggles and smiles. She loves music and loves to be held and cuddled. She has a nurse who cares for her at night due to continuous feeds. My husband takes care of her during the day so I can go to work. He does physical therapy with her daily to work on her neck and arm strength. Her legs are actually doing pretty good. We are trying to teach her to roll. She likes the practice but still can’t do it on her own. Our other children love to play with her too. So for those of you who have been told it is hopeless I say don’t give up. We treat Sofia like a normal child, we talk to her, read to her, play with her and sing to her and she loves all of it. She hates baths though.  She is a fighter and that is a good thing!