Twin to Twin Transfusion Syndrome Australia Inc.

A Member Group of the Australian Multiple Birth Association
 

James and Andrew (19 July, 2002)

Hi, my name is Carissa, I am 22 year’s of age and I have twin boys. I am writing this to you because I would like to share my story with you.

My husband, Justin and I were married in August 2001. We had not planned to have children straight away but if it happened then we were happy. It was just after Christmas 2001 and before the new year of 2002 that I found out that I was pregnant, we were very happy about this. So I went to the doctor and they sent me for an ultrasound to check on dates. At my first ultrasound they told us that we were having twins, which was a shock. Although there are twins on both sides of the family, I just never thought that it would happen to me. Not that that matters here as they are identical.

As the pregnancy went on I got really bad morning sickness. But that finally ended. The doctor sent me for another ultrasound at about 16 weeks. It was then that they realized that there was a problem with the twins. They found that they had Twin to Twin Transfusion. So I had to go for ultrasounds at least twice a week. As the pregnancy went on there were more problems. The smaller one did not have much amniotic fluid around him. The larger one was making extra. The danger was that the extra fluid being produced by the larger one could trigger early labor. So they started to keep a very close eye on things. We were told that the likely outcome was one, if not both the babies would die before 20 weeks. So between 16 and 20 weeks was very stressful. But the 20 weeks came and we still had both babies.

It was a relief that they were both hanging in. The doctor continued to keep a close eye on things, as they were not getting any better. As the weeks went on, we found out that one was small for their dates but the other one was very small and now under the 5^th percentile. The bigger one of the two was getting most of the nutrition, which meant the smaller one was getting very little and not growing. We were told for them to have a chance they would need to make it to 28 weeks at least. Finally we got there. Things had picked up a little bit, the smaller one had more fluid around it and the larger one wasn’t producing as much. However the smaller one was now struggling as he was having trouble pumping blood back out of the placenta. We also noticed around the same time that the blood in the heart of the smaller one had started to flow backwards between beats. This, of course, added to the concern.

So I began having ultrasounds every second day. My doctor said that to give them the best chance he hoped to get them to about 34 weeks and then he would deliver them. But things started to go downhill quickly over the next few weeks. The smaller one was not putting on weight at all and was having difficulties pumping the oxygenated blood out of his body. He was beginning to show the early signs of distress.

We began having the babies monitored on an ECG machine every second day, and having an ultrasound every other day. At this stage I was at about 32 weeks. The second time I went back to have this done, they called in my doctor because things were getting worse. The smaller one was struggling. So after consulting the team in the neo-natal unit my doctor decided that the best option would be to do a c-section and deliver them immediately.

Our twin boys were delivered at 32 ½ weeks. Our eldest son James weighed in at 1030gms (2lbs 4oz) and was just 35cm long. He was so tiny it was hard to believe that he had made it. Andrew was born just 6mins after his brother and he weighed in at 1690gms (3lbs 12oz) and his length was 42 cm. They were at approximately 25 weeks and 28 weeks development instead of being 32 weeks as they should have been. They both were taken to the Intensive Care Neo Natal Unit at the Flinders Medical Centre.

Andrew needed oxygen and also chest drains as oxygen was leaking into his chest. His blood was also too thick and needed to be thinned. There were a few other problems such as jaundice as well. Even though James was the smaller one, he did well and was ok for the first couple of days. After this he started to decline and required oxygen through C pap for most of his stay in hospital. James also had to have long line drips. He had two in his head, one in each of his legs, one in his groin and another on his right leg over the next couple of months. We also found out that James had an open valve and a hole in his heart. For the valve James was given aspirin, which closed it up. The doctor’s were hoping as James put on weight that the hole would close over. Andrew, once having the boxed oxygen, seemed to pick up although he had to have more chest drains as more sacs had ruptured in his lungs.

It was a very hard time to go through. My husband and I spent every spare minute we had at the hospital with our two miracle boys. I would spend all day at the hospital before making tea. When my husband came home we would eat tea then go straight to the hospital to be with the boys. On weekends and days off we would sit at the hospital with them. We basically lived at the hospital for 3 months.

The day after the boy’s were born my doctor came to visit and to tell us some news. First he told us that the boy’s were identical. This was suspected as twin to twin transfusion only happens in identical twins. The chances of it happening are 1 in 1000. They had also found that the umbilical cord of the smaller one, James, was not attached directly to the placenta. There were a few blood vessels running up the membrane between the boys which then went in to the cord. On top of everything else he didn’t even have a proper umbilical cord supplying him. The Obstetrician said to us that James shouldn’t have been with us. So we were thanking God for the miracles that he did to keep our boys alive. So after a couple of months in intensive care Andrew was able to come home. We were even blessed enough to have him home a couple of days before his due date. (Which would have been the 11^th of September). James had to stay another month and a bit.

Taking both of the home for the first time together was the happiest day of our lives. We went back to the doctor in February to review the hole in James heart. We found out that it had closed. But the doctor also told us that he had never seen a hole like the one James had close over. He couldn’t believe it didn’t need to be operated on. Because of the size, location and the fact that it was also through a section of muscle.

Our boys are now over 18 months old and they are both doing very well. We have been very Blessed through the pregnancy, delivery, intensive care and even now as there are no long term effects from either their problems or from their premature delivery. The boys were born on the 19^th of July 2002 and we are looking forward to celebrating their second birthday.

Well that is the story of James and Andrew.

We are so greatful to our God that he did this wonderful miracle for us.

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