There are mornings when I wake up and wonder if I am on a reality TV show. Maybe I signed up and was chosen, but then I forgot. I think the show could be called How Much Can One Family Take?....or The Last Family Standing. I know that there are many other contestants on this show with us, but they are so far away that we are left to ponder how they are coping with their situation....and is there really anyone going through the exact situation that we are? These are the thoughts that float through my days as I cope with a child that is ill.
Our beautiful baby girl is named Emma. Emma is 21 months old, and she has already endured so much in her short life. She is my hero and my inspiration. She wakes up every morning with a smile on her face, and she can get mischievious in .2 seconds! She is my reason for getting up in the morning, and she is my hope that life will be good again one day....as it has already become so much better than it was 1 1/2 years ago.
Emma was born in August of 2003. When she was born it was noted that she had some unusual characteristics. The "geneticist" word kept popping up. Tim and I didn't think much of it, as the characteristics that were mentioned were also present in us. She was just perfect...that was all we knew. The second night of Emma's life her blood sugar plummeted. Thankfully, the nurse on duty was quick to get help, and Emma stabilized within 12 hours. That event never happened again, but at the time I remember thinking that she was going to die and my world was spinning. Little did I know that life would not stop spinning for a LONG time...possibly never.
We were sent home with a baby that was not extremely interested in eating, did not cry very often, and slept MOST of the time. Within 3 weeks she was extremely jaundice. At six weeks we were sent to Denver Childrens Hospital. I remember her pediatrician telling us just the week before, "There's nothing to worry about. If you needed to worry then you would be on your way to Denver"...and so the voyage began!
We cried the entire way to Denver. Emma got sick 3 times on that trip. We finally arrived at 1:00 AM. We needed to be at the hospital at 7:00 AM. We held Emma so tight between us that night as we had nightmares about what was to be. We admitted Emma to the hospital the next day. Five minutes after placing her in her crib, the geneticist (a man that to this day gives me horrific nightmares) came in and just threw out the name to an awful syndrome. I calmly asked, "what does that entail?" He throws back at me, "Severe mental retardation. She will probably never talk and she will not walk until she is 3 or 4...if that. However, that does not explain the jaundice. There has never been a child with this syndrome that has had liver disease with it". Then, the "wonderful" doctor left. He left us in a dark and lonely place with so many unanswered questions. YUCK!!! Within the next 30 minutes, at least 15 other doctors came in. They were snapping pictures of her, asking my pregnancy history over and over again, they took x-rays, blood draws. THIS IS NOT MY REALITY!!!! Please let this just be a bad dream....remember that my life is PERFECT and so is my child!! DAMN all of you as you are just making this up!!!
Well, Emma had a liver biopsy later that day. She was diagnosed with Biliary Atresia, a liver disease that effects 1 in 15,000 children. She also had blood drawn for the "syndrome" that came back negative (however, only 25% of children with the syndrome will test positive). The geneticist also came back in later that day and told us "he was hedging on this"...after looking at all of the data he just was not sure that she had it. HELLO, THIS IS MY LIFE THAT YOU ARE TREATING AS A YO-YO!!!
When we went back to Denver for a liver transplant evaluation in December of 2003, the same geneticist came in to tell us that he absolutely did not think that she had that syndrome. (that syndrome effects 1 in 300,000 children...it has never been linked to liver disease...so, the chances that she has both Biliary Atresia and that syndrome are 1 in 200 BILLION!!!) What are the chances??? So, after being told that exciting news...we were on cloud nine...only to be struck by lightening again!!
At birth, Emma's valve in her heart that usually closes when a baby is born (something to do with the oxygen supply) did not close. We were told that 50% of babies it will not close right away, however it will close within the first 3 months. Right after being on "cloud nine" we were told that hers had not closed, and it was causing pulmonary hypertension. "We will be doing a heart catherization on her tomorrow morning. We will insert a spring into her heart and get the hole to close. Then, we will administer different drugs to see which will react to the pulmonary hypertension". If we cannot control it....she will not be able to be listed for a liver transplant. No liver transplant= death!!!!! NO....MY "PERFECT" CHILD CANNOT DIE!!!
She came through with flying colors. She was listed for transplant, and she received her gift of life in March of 2004. She has a beautiful personality, and she does wake up every day with a smile on her face. However, she is still NOT walking on her own, and she is NOT talking. Even though we have been told "no, she does not have that syndrome" it will linger in the back of my mind until she appears "normal" to me. Is she not doing these things because she was SO sick for SO long...and she just needs time to catch up (please GOD let this be the reason), or is there more to come??? How much more can one family take?? Is this My REALITY!?!? (could it be that she is the "lucky" 1 in 200 billion)... Stay tuned......