“…he is a happy baby, very ‘compatible with life’!”
Charlie Battaglia, Trisomy 13, 09/24/2015, Lake In The Hills, IL
Additional text 4/2/2016: Charlie is 6 months old and just gave us our first scare. He started having breathing problems and was hospitalized for over a week with what they thought was a virus. Turned out its a heart condition not typical with t13.
He has left ventricular non-compaction cardiomyopathy. He may have had a virus that caused some of the increased and dramatic symptoms but there is no cure, just management of symptoms as they present themselves. He was not given a timeframe as there really isn’t a way to do so. We have to monitor him closely and treat symptoms as they come up and keep praying. Everyday is a gift with him and I will continue to treasure each one as I have been since the day he was born. He wasn’t expected to make it to birth and 6 months later he’s still fighting and defining odds. I am truly blessed to have such a strong son!
Original text: I was never one to do any of the tests the doctors offer you when you’re pregnant such as for Down syndrome or anything like that. But for some reason, being my fourth pregnancy after having three girls, the thought of knowing early on whether I was going to have a boy or another girl was enticing. So at 11 weeks I took my 3 girls with me to my appointment to get the test results. My girls sat in one room getting the good news that we were having a boy while I sat in another room getting the devastating news that my baby had a 50/50 possibility of having trisomy 13. The doctor told me if it was trisomy 13 I would either lose the pregnancy, or that my baby would die shortly after birth. The girls were so excited to go home and make gender revealing cupcakes for me, but all I could do was cry and cry and cry.
I then followed up with a group of high-risk doctors and had an amnio that confirmed full trisomy 13 at 19 weeks. I was heartbroken and all of the doctors tried to convince me to have an abortion being that my son was ‘incompatible with life’.
I felt so alone in my decision as my son’s father left it up to me. My girls kept saying the doctors were wrong.
I have been pro life my entire life but this decision was weighing heavy on me. I was being told my child would not live. I don’t understand how doctors can be so naive; all it took was joining a Facebook group to learn that these kids are ‘compatible with life’, that they are happy and that they deserve a chance. I already loved this little boy so much I knew I had to give him a chance, only God could take him from me if that was His will.
I had many ultrasounds done, but no one would tell me what the abnormalities were other than a cleft lip and cleft palate. When I talked to the Neonatologist at the hospital where I was to deliver to make sure we were on the same page as to what to do when my son came, the neonatologist told me they would do nothing for him as he was ‘incompatible with life’. I thought I was going to die. I was told giving him oxygen if he needed it was pointless because once they took him off he would die. If he was any other baby, not a baby with trisomy 13, that would work but not for my child. So at 34 weeks pregnant I got my medical records and I found a new doctor and a hospital with a neonatology department that was willing to do what I wanted for my son, treat him like they would any other baby and not differently because of his diagnosis.
Charlie decided to enter this world after 38 weeks 6 days in my belly! He blew doctors away and scored all 9’s on his apgar. Other than a unilateral cleft lip, a bilateral cleft palate, a small PDA, VSD and ASD as well as one hand slightly deformed, he was perfect! He needed no assistance breathing. His only need was an ng tube for feeding. I was also taught how to feed him using a haberman bottle. We went home 2 days later!!
Charlie continued to prove the doctors wrong. He could not latch on to breastfeed so I pumped and fed him his bottle. He loved his haberman bottle but at an appointment with a group of doctors to discuss surgery for his lip and pallet this group of doctors thought he was aspirating and had him admitted for observation. They found he was not aspirating and he showed them how well he could breathe. His oxygen levels were amazing, so we went home the next day. A week later he passed a swallow study, shocking the doctors and proving he didn’t need a tube for feeding.
Charlie is now four and a half months old. Other than the 2 small holes in his heart (one closed very quickly) which they think will close on their own, a problem with vision in one eye and an issue with his hearing that we are working on, he is a happy baby, very ‘compatible with life’! He loves to smile and giggle when he sees me or his sisters or when we tickle him; he is a joy and makes our family very happy.