Twin to Twin Transfusion Syndrome Australia Inc.

A Member Group of the Australian Multiple Birth Association
 

Joshua and Caleb (26 January, 2000)

I discovered at 13 weeks that I was pregnant with twins (not totally unexpected, as I had expanded quickly). At an early ultrasound, our doctor informed us that our babies were monozygotic (identical), and we were overjoyed – we couldn’t believe our luck! Due to the higher risks a multiple pregnancy poses, I was sent for regular ultrasounds at monthly intervals. I was approximately 18 weeks pregnant when I first heard of a disorder of multiple pregnancy known as Twin-to-Twin Transfusion Syndrome. For lack of better words, TTTS is a ‘deformity’ of the placenta (identical twins usually share a single placenta) where blood and nutrients do not pass evenly to each baby – ie. one baby receives too much blood, and the other baby doesn’t receive enough. It is a rare but very serious complication - the bigger baby (the recipient twin)’s heart often does not cope with the extra strain and they can experience heart failure, while the smaller baby (the donor twin) is at risk of death from anaemia & low birthweight. At our 18 week scan, we had one baby slightly bigger than the other – the first warning sign of what was to come. My obstetrician was watchful, but not overly concerned at that stage, as there were no other signs of TTTS, such as high/low amniotic fluid levels. My next ultrasound was at 22 weeks, where the smaller baby (twin 2) was still falling behind his brother growth-wise (we had found out that they were both boys), but was still within normal ranges, however the smaller baby now had lower than average fluid levels. Concerned, but by no means in dire straits yet, I was sent home & told to take it easy & rest as much as I could, and my ultrasounds were moved forward to fortnightly intervals. At 24 weeks my next ultrasound was due, and I went along hoping everything would be better this time, however all hell broke loose…baby 2’s growth had slowed right down, and his amniotic fluid level had taken a dive as well. In addition to this, he had an enlarged heart, which was due to the stress he was under from missing out on extra nutrients through the placenta. Dazed, and not too sure why this was happening to me, I was ushered into my obstetrician’s office along with a sympathetic look from my OB. He gave me an interpretation of the ultrasound report…during the ultrasound I was told various things, but had no idea really what was going on – my OB told me that the baby 2 was in a lot of trouble and could die. At this stage, baby 1 was only about 700g, and baby 2 about 400g, and the doctor thought that a caesarean section might have to be performed at 25 weeks gestation. If this happened, he said, there was a possibility I would go home with a caesar scar & no babies. I was sent home to pack my bags for hospital, where I went the next day, for an appointment at the Maternal Fetal Medicine Unit, the section of the Mater Hospital that deals with problem pregnancies. Another ultrasound was performed, things were still looking pretty bad, but the decision was made by the specialist and my OB to leave the babies in the womb until there was absolutely no other option but delivery. I was given one lot of steroid injections to boost the babies’ lungs in preparation for premature delivery. I remember spending most of that day in tears, not sure what was going to happen. I was admitted to the maternity ward upstairs and put on bed rest, and another ultrasound scheduled for 2 days following. I went into that ultrasound with my heart in my mouth…what the ultrasound showed would more than likely determine whether my babies lived or died – if the situation was still as bad as it had been, we would be looking at a 25 week delivery. Thankfully, the situation had improved somewhat…the flow of blood that had been travelling one way, had reversed and slowed, allowing the babies to stay in the womb for a little longer. Twin 2’s heart was still enlarged, but beating strong. Twin 1 seemed relatively unaffected by the TTTS, except for a “funny” liver (which is quite unusual for TTTS – usually both babies are badly affected). I was kept in hospital for the next 2 weeks, ultrasounds were performed every 2-3 days, and the babies’ heartbeats were checked 3 times per day. Twin 2’s heartbeat, with him being so much smaller than his brother, was sometimes difficult for the nurses to find - I would start to panic, but eventually they would find it. We took it day by day, each day the babies were growing a little bit bigger, a little bit more able to survive if they had to be delivered. I used to study a pamphlet that the Intensive Care Nurseries had given me, and each time they grew a little I would look at the survival rates given for that weight…first 50, then 70, then 80%. By the time I had reached 27weeks, things had improved somewhat, and the babies were growing well, so the doctors allowed me home for 2 weeks, although I still had to return to the hospital for twice-weekly dopplers (ultrasounds targeting blood flow). I was also still on bed rest, which would get quite frustrating, and my poor husband would come home from a full day’s work and have to make dinner and do housework while I just sat around! At 29 weeks, twin 2 was beginning to look quite stressed again, so I was admitted back into hospital and another set of steroid injections were given. This time, I had a feeling that I would have the babies before too long, and sure enough, my OB scheduled a caesarean section for 26th January 2000 (Australia Day). I would be 30weeks & 4 days gestation. He told me that we had been so lucky to get this far, and he didn’t want to lose the extra advantages we’d gained by waiting until the babies were too sick to survive. I checked the survival rates again…Twin 1 (at around 1500g) had a 98% chance, while Twin 2 (at around 850g) had about a 90% chance. That was good enough for me, at least we should come home with one baby, and if we were lucky, we would end up with both. On the morning of the twins’ birth, I was prepped for my caesarean, and at 8:10am Joshua (twin 1) was born, weighing 1560g. His brother Caleb (twin 2) followed two minutes later at 808g – just over half his brother’s size!

They were whisked off to the Intensive Care Nursery. Joshua needed to be ventilated, but Caleb (amazingly for such a tiny baby) didn’t need ventilation, however he did have CPAP (Continuous Positive Airways Pressure). Both had the IV lines in their stomachs, and the various heart & breathing monitors. In addition, Caleb needed a blood transfusion, as he was very anaemic, which is common with the donor twin in TTTS, this was due to all the blood he had missed out on. The anaemia is what had caused his enlarged heart. Joshua, on the other hand, needed quite a bit of phototherapy, as the extra blood cells he had received had gathered in his liver and needed to be broken down (this had shown up in some of the ultrasounds). The boys were started on my breastmilk by tube after about a week. Joshua was ok on it, but Caleb took a little while to get started. Joshua moved to special care 2 after about 1 and a half weeks, and Caleb followed a week later. We were (hopefully) over the worst now that the boys were out of the womb…we now were focused on helping our babies to grow. Week after week I went up to the hospital, carrying my little esky of breastmilk. Slowly, they grew, and were able to come out of the humidicrib for more frequent cuddles. Joshua soon moved to Special Care 1, where he went into an open cot once he reached 1700g. I was then able to bath him in a “proper” bath, and give breastfeeds, which he took to initially. Caleb was a bit slower to grow, our paediatrician put him on half formula/half breastmilk, which plumped him up a bit quicker, and he started to lose the “death camp” look, after being so starved in the womb! After 7 weeks, Joshua was able to come home…but Caleb was still in the humidicrib at that stage, so we had to leave him in the care of the nurses, which was a bit difficult, but I tried not to dwell on it. I knew that the hospital was the only place for him at the time. I took Joshua up every day when I went up to visit Caleb, and my mother used to come with us, to help with Joshua if I had to attend to Caleb. Eventually, Caleb graduated into SCN1, and soon after, into an open cot. Finally! He came home 10 weeks after the birth, which was actually only 2 days after their due date!

The boys are now 2 years old, they are walking and talking, doing everything that 2 year olds are supposed to. So far, neither has had any problems due to either their prematurity or TTTS. Caleb is still on the small side, weighing 10kg, he’s only on about the 3rd percentile for his corrected age, and will probably take a few years yet to fully catch up to his brother. Joshua is 12kg, and on about the 40th percentile for his corrected age, so there is still a size difference between the two, although the gap is closing all the time. It really is a miracle that we have had such a good outcome. I could only wish that other families who have experienced, or are experiencing TTTS could have the same luck that we have had.

Top

(c) 2004 TTTS Australia Inc.