Tuesday, August 01, 2006

Young family heart story submitted by heart mom Amanda Young.

The struggle of my beautiful little girl started long before her birth. At nineteen weeks and six days into my pregnancy I was told there was no way Merci would ever come here full term. I was fifty percent thinned and a fingertip dilated. I was on bedrest for the rest of my pregnancy and took tons of medication. The weeks creeped by like years!

Merci's birth was a miracle in its self. She was born at thirtyeight weeks and two days. She made it to full term and yet she still weighed only 5lbs. 14oz.! She was a tiny little thing to say the least.

The days that followed her birth were quite painful. They were almost like a bad dream that you just pray you are going to wake up from any minute. I relive them everyday when I look at my daughters sweet face and wonder what her future will hold.

An hour before discharge from the women's hospital in Tupelo , Ms, the discharging pediatrician came to our room and said that he heard a murmur and thought an echo would be needed. He said he really thought she was fine but just wanted to make sure. We were reassured that she would be fine and they would bring her back immediately following her echo.

My sweet little girl was never placed back in my arms that day or for several days to follow. Merci was sent a day and a half later to Lebonheur Children's Medical Center in Memphis,TN. She was accompanied by her little buddy Will Bales.

The moment we first walked into that ICU was when I realized that this was not a dream it was very real and my little girl I fought so hard to bring into this world was sick. She was a kind of sick that I couldn't fix. She was a kind of sick that would never go away.

As we entered the ICU my husband and I both panicked. There were at least ten doctors surrounding the incubator that held my five pound baby. They were literally arguing and debating what Merci's exact problem was. To us it looked like they were panicking and so we thought Merci was not going to make it or something. Then came a clear diagnosis. Our perfect little girl not only had a heart defect but several. She was born with Congenitally Corrected Transposition of the Great Arteries. She had three holes and sub-pulmonic stenosis. This basically means the bottom two chambers of her heart are backwards, and her pulmonary artery leading to her lungs is underdeveloped and has tissue growing in it.

The cardiologist who sat down with us and told us the news actually used drawings to help us better understand what Merci's heart looked like. If you have never had a heart baby and are not familiar with heart defect it is very hard to grasp it all and the picture thing surely helped!

Through all of these tests and many hours of monitoring Merci's condition, she remained stable. In fact, Merci's vitals were perfect. The doctors were baffled! They really expected her to need immediate intervention.

Merci was released from Lebonheur and sent home to grow. She went seven months before a surgery time was decided upon. Her records were sent to Ann Arbor,MI to C.S. Motts Children's Hospital. The world renowned Dr. Ed Bove would be reviewing her chart and would be performing her delicate operation.

We arrived in Ann Arbor, Mi on a cold snowy day in December. We went on the impression that she would be having the Double Switch operation. For Merci this would fix the biggest defect she has and is the only correction for CCTGA.

The morning of Dec. 15 , 2005 we took our little Merci to the holding area with heavy hearts. I had not slept at all the night before. I laid awake that night and just watched my Merci breathe. I wondered if I would ever be able to just lay next to her again.

As we sat there I felt an urgent need to meet the man who would be working on my daughters heart but was told it might not be possible. I was so restless and I guess in my heart I knew somehow that this was not going to work and Merci would not have the operation. Five minutes before my daughter was taken from my arms I got to meet Dr. Bove. He was nothing like I had imagined. He was a tall slender fellow with a very special glow about him. I asked Dr. Bove flat out if he was sure this surgery was what was best. It was then that I was told Merci had obstruction growing not only in her pulmonary artery but it had also attached to her pulmonary valve and it might make the surgery impossible.

The next few hours were the worst I have ever experienced. Several hours into the surgery we were told the Double Switch was impossible and they were going to patch her holes and remove all the obstruction they could. We were devastated and left wondering if she would make it through this.

A few hours later we got a call saying Merci was in the PICU and we could go and see her when we were ready. As we entered Merci's room I felt as if I was going to faint. The pain of seeing your child on a ventilator and unconscious is almost unbearable. So many times you wish you could take their place and the feelings of guilt are overwhelming. There are many days we as heart parents ask ourselves what we could have done to prevent this birth defect from happening.

Much to out surprise Merci was out of the PICU in one day and recovered very quickly. We were home four days before Christmas. I have to say we had already received our gift before we ever returned home! We got to keep our baby girl and what could be better??

The days that followed we very difficult for me as Merci's mother. I had so much to accept. Merci was not able to withstand full repair and this left us with much uncertainty. There are no perfect answers in her case. She is just going to be a touch and go case her entire life.

With all that said Merci at this point continues to thrive and she still baffles her doctors with her "perfect health". This will not always be the case and we as her parents have learned to accept this. What we cannot accept is that our daughter has to face such a serious problem for the rest of her life and yet so many people still have no clue what CHD even means. CHD's are a very serious problem and they continue to afflict more and more children's lives daily. This is an issue that needs to be addressed with all seriousness. There is much to be learned from these "Half Hearted Soldiers".

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