Satyawan, Benjamin

[left:577ce7d64c]http://www.cdhsupport.org/graphics/Satyawan-Benjamin.jpg[/left:577ce7d64c]Ben was diagnosed with Congenital Diaphragmatic Hernia in a late gestation of week 36. When we were first told about the defect we were both devastated. We first felt how unlucky we were to have a very rare case. Now we understand that that was the luckiest day of our lives to know beforehand and get every specialist doctors ready for the day.

We kept the gender of the baby for a surprise. But knowing the baby has the defect, we would like to know the gender to name him and start calling him by the name. It was a baby boy. He was our second child; our first is a 3.5 year old girl, so it was happy news wrapped in a bad news.

One week after, we were given a tour to see the special care nursery. I guess they wanted us to be prepared for those wires that are going to be attached to our little one. The fetal specialist did another scan, she said the CDH is on the left hand side. Only the bowel came up to the chest and the rest of the abdominal organs were in place; which was a little unusual. She hoped that the baby would have a full term of 40 weeks, so that he will be more matured for the battle.

In the afternoon, on the same day, the water broke. We rushed up to the hospital. They did not want to induce the contraction nor do a caesarean section. Vaginal delivery has the best outcome as it squeezes out water out of baby’s lungs. Ben was born at 10 o’clock in the following morning. He was so blue and purple. There were four doctors in the room tried to save his life. After 5 seconds of cuddle with mom, he was put straight on the oxygen in thermal cot and was sent straight away to the special care nursery. Daddy was with him when the doctors tried to stabilize him. He was put on a high frequency ventilator with all other wires attach to him. They did an x ray. It was a positive case of CDH. Only bowel was misplaced as expected. They could not say how big the hole was. Not until they do the operation.

The operation was going to be done in Children Hospital. They had to transport him in an ambulance. But first they need to stabilize him and move him from high frequency ventilator to the normal ventilator, which is available in portable version that can be carried with the ambulance. Ben was transport a day after. And the children hospital had to stabilize him once again. That night the surgeon told us that the operation will be carried tomorrow morning. They did not want to delay the operation once the baby is in stable condition. They were afraid it was only a honeymoon period before it gets worse.

That morning on the day of his operation, we met the surgeon and anesthetic team. They explained everything. The surgeon said he would rather not put patch on the hole to avoid another operation. The best way to go is to fix the hole properly to give a permanent result. We sent him to the operating theater and gave him a kiss before he went in. It was the saddest moment. The operation was 2 hours long. The surgeon told me the operation was successful, the hole was quite large. But it does not matter anymore whether it was big or small, it is fixed now. The affected lung had a good expansion after he removed the bowel back to the right position. He said not to worry about any other consequences like gastro reflux as some babies might not have one.

After 2 days of recovering. He was off the ventilator. It was very good news. He was in pain when he woke up because the morphine was reduced to avoid respiratory problem. After two days of breathing on his own, suddenly he turned blue and had difficult breathing. Doctors again put him on the ventilator. They did three x-rays on that day. They said the one of lungs was collapsed and the chest was filled up with water. They water were supposed to be absorbed by the body. I guess Ben was too tired breathing by his own.

We have never stopped praying since the problem was diagnosed. The answer of our pray was revealed on that day. Since that down day, he was recovering fast, much faster than the doctors expected.

He was off ventilator again in two days. He was put on CPAP, a lighter breathing support. He was off CPAP after 2 days. He starts to breath by his own since.

He started to get hungry and getting very unsettled every time he woke up. Doctor started to introduce a 20ml every 3 hours via the feeding tube and increased it gradually when they found out the bowel was in a cooperative condition. In 24 hour, he took 60 ml, a full size meal for a baby. Doctor wanted mom to breastfeed him, rather than rely on the feeding tube that make him lazy. It took 3 days for him to learn how to suck the milk. Ben passed the hearing test as well. Finally, he was discharged from the hospital after 16 days of battle. We were so happy that day.

Doctors said it was the best case of CDH they have ever seen. They said it couldn’t be any better.

We are writing this story to give victims of CDH a hope and a positive mind. We were lucky to know it on week 36 instead of week 20, so that we had a very healthy pregnancy. Even if you find out on Week 20, don’t feel discouraged. Keeping your pregnancy to the best healthy condition is the important and the only thing mom can do before the baby is born.

Pray and pray a lot, it really helps. God will not give you a test that you can’t bear and is more than your capability.

There are still miracles in the making as long as you really have that faith and ask for it from God. Nothing is impossible for Him.

Thanks God for that speedy recovery of our baby boy.

Written by Ben’s parents, Henny K Dewi and Effendi Satyawan (Australia)
2007