Parrish’s Heart Story

Told by his mother Ashley.

Diagnosis: Hypoplastic Left Heart Syndrome
At: 18 weeks

Parrish, 8 days old, 24 hours after
1st open heart surgery

When I had my Quad-4 Screen during my 2nd trimester, I had tested abnormal for Spinabiffida. It was a week until we were going to see a Maternal Fetal Specialist an almost 2 hour drive from where we lived. I was so worried. When we went to the appointment, we were told that the cut off number was 24 and mine was 25, so they had to offer this additional screen, but were fairly confident that our baby was fine. So we went back to wait until the echo. This appointment was also when we were going to find out what we were having. So, we went in to have a special echo. As the tech was going along he showed us our little mover, beautiful spine and that it was a boy! We just laughed and were so excited. Then, the tech’s face changed and on the big screen in front of me on the wall I just got a terrible feeling that something wasn’t right. The man got very quiet and said something looked wrong but wanted to get the doctor to come have a look. We got very nervous. The doctor came in and apologized, saying he didn’t know how to tell us but our son had Hypoplastic Left Heart Syndrome. He kept talking but I just was in shock. He told us that even with surgery that he probably wouldn’t survive but a few months and that he recommended compassionate care, if he even made it to delivery. Then he said ‘Sorry kids”, and left the room. My husband and I just held each other and cried. I was numb from shock. That was the longest, quietest car ride home. I called my parents and siblings to meet at my mom’s house and told them. No one really knew what to say. That next week, I just cried and tried to look up as much information as I could to make sense of it, to find some hope. Then we were sent to see a Fetal Cardiologist at Texas Children’s Hospital. We went and were told that yes, he would make it to delivery and they had a plan for special babies like him. We were advised that if we wanted to pursue the 3 staged heart surgeries we should think about relocating, especially since when he was born if we weren’t in Houston he would need to be immediately air lifted and he may not have survived the trip. And I did not want to be away from him. So, my husband, who is in the Coast Guard (and ex-Marine) asked for an emergency medical transfer. We thought it would take awhile, but his new orders came within a week and we moved the week after to Houston. I was very nervous about having a shower, and my family was concerned for my mental/emotional well being that if something happened to him that I would have all this stuff to deal with. But, I decided that his life, whatever it was to be and however long, needed to be celebrated! We just didn’t register for diapers or many clothes, knowing he would be in the hospital for quite sometime. And with the shower invite I added an insert that told people what he had, what the plan was as far as surgery and websites so people could learn about HLHS and be prepared for the journey we had ahead. And we asked for lots of prayers. Of course I worried about if I had done something wrong, but his defect wasn’t genetic and happens less than 2 in 10,000 live births. We just prayed alot that we could at least meet our son, and most of all I wanted to make sure to hold him and touch him before he went to the ICU. My obgyn and the cardiologists at TCH made a plan and I was induced 2 weeks early. I had a vaginal delivery, since I was doing all the work for him. He did great! It seemed like he had 20 people in my birthing room! But they were all great- I delivered at St.Luke’s right next door, so after he was born they had tubes of his medicine ready (to keep his heart from going into shock) and let me hold him and we got to take pictures. He was already ‘talking’ to me and so aware. Parrish Archer was 6lbs. 15oz. which his surgeon later told us really gave him the best chances of survival through surgery. Even though our surgeon said he had one of the ‘worst cases of HLHS he had seen’, he pulled through great! He had his 1st open heart surgery at 7 days old, his 2nd at around 5 months, plus 2 heart catheterizations to open his aortic arch from narrowing and is a stroke survivor. We spent about 5-6 months total over 5 hospital stays. My husband and I celebrated our 1

Parrish, 1 year old

year wedding anniversary in the hospital. I would not go back and do anything different. There are some people who would have chosen compassionate care, to not choose surgery for their children- but when I felt him kick for the first time that terrible day he was diagnosed with HLHS and we knew there was even the slightest chance for survival- we chose hope and to give him the chance he deserved. At first we thought ‘why us’- so many people have healthy children everyday. I did everything ‘right’ during pregnancy. And then one day on the way to the hospital I realized a higher power must think we are special and can handle taking care of his precious angel. I have/had made it my mission to find out everything I can about his condition so I could be prepared when he came and to give him the care he needs. I researched, joined support groups, kept a journal, wrote poems, and was an advocate and really learned as I went. I am never afraid to ask questions. I even made a webpage through the hospital and a blog so that friends and family could keep up and educate themselves about our little miracle.

~Ashley, July 2009