The day we found out what was wrong with our little girls heart. Chris and I chose to have his mom with us for this appointment. As a former cardiac intensive care nurse, we knew she would be able to understand all the terms that would be thrown at us this day. We went into this appt. optimistic. After our ultrasound at my OB's office, we got the chance to sit down with Chris's mom and explain what the OB's office was able to see. Lori has seen many repairs on hearts and reassured us that almost anything on the heart can be fixed medically these days. It will still be a hard journey, but most everything can be fixed. Of course we were under the impression that it was just a small hole in the middle of her heart and some calcification. Little did we know that it was way worse than that.
As I lay on the u/s table for around 30-45 minutes while "Dr. B", our pediatric cardiologist, did our fetal echocardiogram; there was complete silence in the room. He told us in advance that he probably wouldn't say anything throughout the echo, so not to be alarmed. It felt like an eternity. To top it off, our little peanut was still laying with her spine up and the Dr. wasn't able to see everything he wanted to. So off I went to walk the halls while he examined the information that he had received so far. Chris and Lori (his mom) stayed in the u/s room and attempted to keep the mood light. After about 15 minutes, Dr. B had me go back to the u/s room to see if our little girl had moved any. Spent another 10-15 minutes on the table while he tried to get a few more images of our little girl's heart. One thing he did mention at the end of the echo was that he couldn't see her aorta. When he was done with the fetal echo, he told us we would go across the hall to a patient room to discuss his findings. Before we left the u/s room he said "I'm not going to sugar coat it, it is serious" or something along those lines.
As we sit in the patient room waiting for Dr. B to come in I start to ask Lori questions and prepare myself for what he has to say. I'm asking my mother in law, "what if she needs a heart transplant or worse, what if they can't do anything for her at all". She was able to calm my nerves a bit as she reminded me that those options would be very rare.
Then the Dr. came into the room. He handed us a diagram of a normal heart and then gave us one of the heart condition he was diagnosing our daughter with. He told us that from all the imaging he was able to get, it appeared to him that our daughter had Hypoplastic Left Heart Syndrome. When I saw the color pretty much drain from my mother in laws face, I knew this was not a good diagnosis to receive in terms of heart defects. He told us that basically the left side of our daughter's heart is severely underdeveloped and not functioning. The white spot in her heart that was thought to be calcification is not calcification at all and is actually called endocardial fibroelastosis (he gave us an easier to understand term for it at the appt., but I can't remember what it was). Basically if I remember correctly how he explained it to us was that it was a thickening of the inner lining of the chambers of the heart from extra tissue, kind of like scar tissue. This condition effects how her heart pumps, therefore leading to her left side of her heart not developing appropriately.
Unfortunately, b/c the surgery for Hypoplastic Left Heart Syndrome has only been around for 20 years, there isn't a lot of information about long term outlook for HLHS kids. The oldest living patients w/ HLHS are in their early 30's. He made it very clear to us that HLHS is by far one of the most complicated heart defects a child can have. Dr. B said that there is no cure or fix for HLHS. All they can do is repair her heart in a way that will re-route how her heart pumps. She will always only have half a heart. High intensity sports probably won't be an option for her, but every child is different. Chances are she may need a heart transplant later in life and her heart weakens from only pumping with a single ventricle. Survival rates if I remember correctly are around 70%. However the survival rate for each surgery varies.
We were given 3 options for "treatment".
1) Compassionate Care - Take her home and let her live out her days at home. She would probably pass away within a week.
2) Put her on a transplant list - Donor hearts for newborns are hard to come by and chances are she would die waiting for a heart.
3) Series of 3 open heart surgeries. Norwood at 4-10 days after birth. Hemi-Fontan at around 4-6 months of age. And the Fontan anywhere from 18-36 months of age.
We chose the 3 surgeries. We can't imagine life without our daughter and feel that she deserves the right to show us how strong she is. We will hope and pray that she stays strong enough to undergo all of this and we will do our best to make sure we give her the very best life possible. This was by far the hardest day of my life. After leaving the pediatric cardiologists office, I called my mom and lost all composure. How do you deal with learning that your baby only has half a heart.
(This post is already long enough as it is so I will be sure to make another post about the aftermath of learning our daughters diagnosis and where to go from there. More info on the surgeries at a later date as well.)
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