Connor’s Story, by his mama

Post by Carrie

My Connor's story...I had already had a rough first half of my pregnancy...my son's father decided that he did not want a child, and tried setting me up for an abortion, which I refused. Since about 9 weeks on, I had been dealing with things alone, but we were getting by. 

I had my 'big' ultrasound at 23 weeks, as they were unable to get all the measurements they needed at one a month before. I left there feeling good, I was having a little boy, and even already had a name picked out ~ Connor. I had gotten in my car when the ultrasound tech came running out, saying the doctor needed to talk to me. That was the first indication something could be wrong. I went in to his office, wondering what could possibly be going on. It's his heart, I was told. They couldn't tell me what exactly, but something was wrong. I was sent to the hospitals perinatal center that afternoon for a more in depth ultrasound and to meet with the perinatalologist. By the end of the day I had a more clear idea of what was wrong with my baby boy. He ended up being diagnosed with Hypoplastic Left Heart Syndrome (HLHS). Basically Connor had half of a heart; the left side was so underdeveloped that it was useless. There were quite a few other complications surrounding his heart, and possibly stomach and esophagus, but this was the most severe problem that needed to be addressed.

I sat alone in an exam room and for the second time in this pregnancy was given the option to abort my child, as this type of defect is 100% fatal without surgical intervention in the first few days of life. For the second time, I realized I would have to fight for my child, and do so on my own. I chose to carry my son, and explore the options that were available. There has been a series of surgeries developed that can prolong the life of those with HLHS patients, to divert blood flow through the heart, that have shown some success. There also could be the possibility of a heart transplant down the road. 

I spent the second half of my pregnancy meeting with the cardiologist, the surgeon, and the hospital staff, preparing to send my newborn baby into open heart surgery as soon as possible after birth.

He was born on a hot July day, and from the outside looked perfect. 

Baby Connor <3

I held him and loved him for two days before he was transferred to the local Children's hospital to prepare for surgery, while I was still recovering at the hospital myself. We had set up his surgery for early the next week, so they could get a clear plan in place of what to do. My Connor never made it to surgery. I was called at the hospital early that Friday morning, telling me they were so sorry, they tried everything they could, but I needed to come say goodbye as he had had a turn for the worse. I was told over the phone that my son had died, and there I sat in my hospital room, alone yet again, crying and trying to get to see my baby boy. 

I have a lot of regrets, but not one of them was for choosing to give my son life. I knew him his whole life, and he knew nothing but love. I have since learned about perinatal hospice, and that is a regret I have, that I didn't say no to the interventions and allow him to just stay with me and die in peace. Hindsight is 20/20 though, and I honestly thought at the time that that was best for my child. It is a hard thing to try and accept that your child may die, and even harder to actually go through. But I am a stronger woman and mother because of a little boy named Connor.