I became pregnant with Crystina in April of 1999. The pregnancy was very difficult, with bleeding and required progesterone shots. During a sonogram, we found out that Crystina had a hole in her heart, some symptoms of Down Syndrome, and she was measuring very small. The doctors watched her very closely.
I went into labor on the 22nd of Dec. at 5 am. Though there were some complications during the labor and Nina was very little (3 pounds and 14 ounces), she seemed very healthy. They tested her for Down Syndrome, but she didn't have it. They also gave her a heart echo. She did have a hole in her heart, but the doctors said that was normal and it would close in a couple of months. She also had a heart mummer, but that was causing her no problems. They told me to have a follow up at 2 weeks old. We were very happy with the outcome, not knowing what we had ahead of us. Crystina did well, and we brought her home on DEC. 28. When she came home we were very excited and relieved to have her home. We took her to the doctor at 2 weeks for a heart echo. It came back normal, but she still had the hole. The doctor wasn't worried about and said it would close soon. He said he wanted to see her again in a year. I told him that was to long, and he said to bring her back in 6 months. Little did I know that is what saved her life.
Crystina’s growing was normal until she was 4 months old. She started sleeping more. She didn't want any playtime. She was turning blue, and her head just stayed on one side. She never had any feeding problems, and she was always a good eater. I would take her to the doctor often because she would turn blue. The doctor put her on a heart monitor and did all kinds of x-rays and labs. Everything came back normal. They never once told me to take her to the cardiologist. They would ask when her next appointment was. When I told them that it was in late June, they said that was fine. I would always ask them if I need to take her sooner, and they would always say no.
Eventually, everything just kept getting worse. Finally the day came to see the doctor. When the doctor came in he listened to Crystina, and his mouth dropped. I will never forget the look he gave me. He calmly told me to come with him because she needed an echo. They did the echo, and when he was done I had to go out and wait. When he came in the room he had tears in his eyes and told me she needed surgery right away. He explained the heart cath and what he would be doing. They had to open up her left and right pulmonary arteries. On July 10, 2000 we took her to All Children's Hospital for the surgery. We got to meet the doctor whose hands I was putting my daughter’s life in. It wasn't like me to just trust anyone, but everything happened so fast. We didn't know it then, but we were sitting on a ticking time bomb. Dr. Giroud met with us and explained the surgery. When he got done he asked if any doctor had told us about Williams Syndrome. We both said no. He told us he would tell us more about it after the surgery. He told us the surgery would last about 3 hours, and we could go home the next day. That never happened. I had a sick feeling in my stomach. I know deep down that something else was wrong, and I was right.
After about 5 hours of surgery, the doctor came out to get me and my husband. The doctor had three other doctors with him. My husband and I were very nervous. The doctors showed us pictures of our baby's insides. There was hardly any blood going from her heart to her lungs. She could barely breath. Her heart was bigger than a full grown adult. She was near death. Her heart at any moment could explode and kill her. It was a ticking time bomb. The doctor told us that he tried to open the arteries with the cath, but they would not open and stay open. He did open most of her arteries in her lungs so she could breath. He showed us the hole in her heart. He said if she didn't have that hole that she would have died. The hole was letting some of the pressure off the heart. So, the hole she had when she was born, that was supposed to close in a couple of months, is what was saving her life.
When Crystina came out of surgery, she was in very serious condition and was sent to the ICU. They keep her in a coma so her body could heal. She developed a blood clot in her leg as well, because she was in surgery so long. We couldn't hold her when she was in ICU. She had tubes everywhere. She was so swollen and purple looking. It broke my heart looking at her like that. All we could do was hold her hand and talk to her. It took us three days before we could hold her. We stayed by her side the whole time. But Crystina showed us just what kind of fighter she was. She woke up smiling. We had her laughing. She was so happy, for a little while. Then the day came for open-heart surgery. They had to reconstruct her left and right pulmonary arteries. We prayed a lot during the surgery. It took 4 hours before the doctor came out smiling. He told us everything went great and Crystina had all new arteries. She did very well. We were extremely happy, but we weren’t out of the woods yet. When she came out of surgery, I wasn't prepared to see her how she was. She was swollen again and had tubes in every part of her body. We could only hold her hand or kiss her on her head. When we thought we had heard every kind of bad news we got hit again. They came and told us on July 20, 2000 that she had Williams Syndrome. When they told us that they started naming everything that could go wrong with her. We really hit rock bottom with that. We had so much to worry about. Nina was so sick and lifeless at this point. But everyday she got better. Everyday they were taking things out and they were waking her up. On the fourth day we got to hold her, and we were able to leave a week after the open heart surgery. She had so much more life when she came home. Everything was great until Sept. of 2000.
In September Nina got a really bad cold. Before this she had never had any kind of sickness. She was so sick they had her on breathing treatments and steroids, plus other medications. She finally got better, but the nightmares with colds were just starting.
On October 11, 2000 we went back to All Children's for another heart Cath. This time the doctor was opening more arteries with a balloon. He opened all the ones in her lungs. She did great and we were home in three days. Everything again was great until Dec. 22, 2000, her birthday. She got sick, so I took her to the doctor twice. They said she had a cold and a little bit of phenomena. They gave her lots of medications. Two days after Christmas I had to call 911 because she stopped breathing. I was giving her CPR when help got there. She was rushed to the hospital, and we finally found out she had RSV. They put her on a breathing machine and more medication. She came home and was better on January 3, 2001. After she came home she got sick every three months with a severe cold. When she would get sick I would take her to the hospital right away and they would keep her. This was every time. She would stay anywhere from 3 to 7 days at a time. This went on until she was 4 years old.
Nina has also had many surgeries. She had two eye surgeries a year apart. The doctors were trying to stop her eyes from watering and getting infected all the time. None of them worked fully because she is still teary eyed today. She has a tube in her left ear. Her right ear is great, but before the tube was put in she was deaf in her left ear. We went though ear infections so bad that they would burst inside and drain out. She has also had some problems with the blood flow to her kidneys, but we have found a doctor who specializes in Williams Syndrome, and Crystina has been seeing him. She will probably have to have more surgeries in the future, but so far this has been a very healthy year.
While Crystina has had many surgeries, she has also had many milestones. She started school and therapies at 20 months old. When Nina started she could barely walk. She couldn't chew her food or talk. She was still sucking a bottle. Nina was like a one-year-old and younger on some things. But her teachers and therapists did miracles with Nina. They taught her everything. She was crawling at 15 months, and sitting up around 12 months. She said her first word around 19 months. She was making small talk around 3 years old and talking fully around 5 years old. Crystina has come a long way. She has done this all, even with her being sick and in the hospital for so much of her life.
Nina's is very outgoing girl, and she knows no stranger. She has a very strong will to live. She never gives up no matter how hard the task is. She tries a million times before she asks for a break. We have been through a lot, but the Lord has never left our side. My hope is that everyone who reads this will sees that the Lord is real; all you have to do is believe. Crystina is a walking miracle of His work.
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-The support, information and encouragement provided by the PPFL parents is not meant to take the place of medical advice by a medical professional. Any specific questions about care should be directed to a health care professional familiar with the situation.