Abigail’s Story

Abigail’s story is quite a lengthy one. Going back to the pregnancy with her,  the doctor’s office done my tri- screening to test for chromosomal abnormalities. It came back with the results that she may be born with Trisomy18. This is a defect similar to down syndrome but in the 18th chromosome instead. It is a defect that is “incompatible with life” and the Dr. wanted to do further testing and said that they could do a late term termination if we chose that route. We were devastated, however we have a very strong faith in Christ and opted not to do any more testing because no matter what, She was our little gift from God and we were going to be thankful no matter how much time we would have with her.

 

My doctor then sent me to a specialist that could at least check the baby’s growth and for possible signs of the defect. During this ultrasound they also performed an echocardiogram on the baby’s heart to check for common defects. The doctor said her heart was the perfect picture of health. They said they seen no defects nor did they see any signs of her having trisomy 18. But it was still possible for her to have trisomy18. We went on thru the pregnancy not really knowing but overall she seemed to be healthy. She was born on June 12, 2009. Her birth came a little early at 37 weeks due to me falling and thus sending her into fetal distress. She was born by an emergency cesarean. We were awfully frightened when they wisped her away to the NICU. Not knowing why, we just assumed the worst, that she must have Trisomy 18. We were devastated. Then we heard the dr. say that something was not right with her heart and she needed to be placed on a ventilator,to help her breath because not only was something going on with her heart but she had also aspirated muconium into her lungs as well.

 

We waited for about 6 hours after her birth until we finally got to just see her for the 1st time. Still we were not sure if she had the chromosomal defect or not. It seemed forever before any body could tell us anything. Thank God, she did not have this defect in her chromosomal make-up. We spent the entire first month of her life in that NICU, with them telling us that they were not sure what was wrong with her heart but that they knew something wasn’t right with it. After a month of being there and kinda feeling like we were at the hospitals mercy, we finally built up some braun about us and demanded that they call in another cardiologist for a consult.

 

That night at about 10:30 pm, the cardiologist that we asked them to call came and done an echo on Abigail. After only a few minutes he turned and looked at us and said,”I think I know what is going on, but she needs to be sent to a children’s hospital for further testing to be sure!” He also told us that she may have to have some surgery to fix the problem. We were transported the next day to Children’s Healthcare of Atlanta at Egleston. There we spent the next several days waiting for the test results to come back. They had determined that she has a large ASD, A large VSD, and also so many small VSD’s that they could not count them all. She also has  a thickened septum and also pulmonary vein stenosis. All of these defects combined together obviously had her in a high level of heart failure. They opted to try some medication to slow the blood flow to her lungs so that she could breath a little easier and wait for some time to pass and see if the smaller VSD’s would close on there own before doing any surgery. We were finally able to take our baby home for the 1st time when she was about 7 weeks old. We came home on a series of medications and all was going well or so we thought. At 5 months old she seemed to not be doing so well and the cardiologist sent us for another heart cath. We went into surgery 1st thing the next morning, December 1, 2009.

 

Abigail had a pulmonary artery banding done. The surgery went well and we were on our way home again within only a few days. This was a very scary time for us. We came home and celebrated her first Christmas. This was a wonderful time for us considering that at one time we did not even know if she would survive birth, let alone her first Christmas. Right after New Years day she got horribly sick again and we went to Egleston again only to find that she needed to have another surgery. This time on her stomach. She had reflux so bad it was causing her to have what they call a sinus pause. If I understand this correctly it is when the heart and lungs both stop briefly and restart. They decided to do a procedure called a Nissan Fundo-placation. This is where they took part of her stomach and wrapped it around her esophagus to stop the reflux from making it up out of her stomach. During this hospital stay we were there for 3 weeks. Now we are just waiting for her to be healthy enough and strong enough to withstand the repair procedure on her heart.

 

We went yesterday to have another heart cath done and they found that her heart is in the same condition it was in December, so they are not real sure what they want to do at this time. I will keep you posted as I am made aware of what they are going to do. They are talking about possibly redoing the pa band to tighten it so it will work more like it is supposed to.    -Kay