Halvor
was born on July 13th, 2000 in Oslo, Norway, 13 days before due
date. He was only 2.8 kilos. He has three older siblings. Half way
into the pregnancy, it was discovered that he was not growing
properly. Towards the end of the pregnancy, the ultrasounds showed
that there were some problems with his heart. Immediately after he
was born, he was brought into the ICU unit because he was very blue
and had a very loud murmur. He spent a week in the ICU and was
diagnosed with SVAS and pulmonary stenoses, as well as peripheral
pulmonal stenoses. He did well and was eating and breathing on his
own. We were released from the hospital, as they thought he would do
okay. Due to multiple stenoses, the FISH test had already been
taken, as Williams syndrome was suspected.
We received the positive result from the FISH test after three weeks. At that time, his heart condition had worsened and we were admitted to the hospital. He was showing signs of heart failure and was put on meds. After two weeks we were released. He was not eating, was very blue and had a bad cough. After 6 days, we rushed him back to the hospital where he was admitted. He was now 2 months old. Blood tests, EKG and ultrasound were used and it proved that he was having a heart attack. He was immediately rushed to the OR and was given few chances to survive. It was the SVAS that caused the heart attack (myocardial infarction). After 6 hours surgery, he had receievd a coronary bypass and some of the pulmonal stenoses had been dilated. Against all odds, he lived. But the recovery was very long -- 3 months in the hospital. During this stay he also had hernia surgery.
Now he is doing well. He crawled at 11 months and took his first steps at 13 months! He is not eating well and has a tube inserted into his stomach where he receives most of his nutrition.
The heart attack caused damage to his heart. He has left ventricular hypertrophy and two valves are leaking. The peripheral stenoses are still there. He might always have some degree of heart insufficiency. He uses ACE inhibitors, beta blockers and medication against possible blood clots everyday. As he has grown, the doses have been increased. but we are optimistic. He is a stayer!
Halvor has the typical WS personality and is adored and loved by everyone. He will have another sibling in December to play with!