Twin to Twin Transfusion Syndrome Australia Inc.

A Member Group of the Australian Multiple Birth Association
 

Paris and Madison

I saw my obstetrician very early in my pregnancy because of some abdominal pains (which were unrelated) and because she had said to come and see her when I fell pregnant. I had been seeing her for endometriosis for a couple of years, and there was a possibility that I might have needed to try fertility assistance to increase my chances of falling pregnant.

So in her rooms, when I was only 7 weeks pregnant, an ultrasound was done and it showed TWO heart beats – I was carrying twins. My obstetrician urged us to keep our news quiet because of the significant chance of miscarry at this early stage. Nevertheless, I think my husband rang about ten people that evening to tell them the great news.

By the following week the morning sickness set in – but it wasn’t just in the morning; it was also in the afternoon, evening, and night.  I vomited despite maxalon and ginger tablets, though they did help and I knew if I’d missed a dose. I remember writing in my diary just how incredibly awful I felt. I could enjoy nothing. I had no energy for anything.  I had to stop work and simply lie on the mattress in the loungeroom. Eventually, I also took sedatives in the evening to help from vomiting at night.

It was an extremely hot summer, nothing less that 33 degrees most days, with a top of 38 to 40 degrees all too often. Thankfully, we were able to buy an air-conditioner for the living area. My visits outside this area were limited, as going out into the heat, even just to the kitchen and bathroom, could induce more vomiting.

In the fifteenth week I began to feel better - I even began enjoying a shower again. The vomiting settled substantially. I could sleep through more of the night. I was already showing quite a belly before the third month. By fifteen weeks there was no mistaking I was pregnant, as my abdomen protruded markedly and I had to go and buy some maternity wear as none of my clothes fit.

I saw my obstetrician every two weeks, at 9 and 11 and 13 weeks. The ultrasounds were revealing that one twin (one of the ‘blobs’) was a lot smaller than the other. At 13 weeks, my obstetrician also saw that the larger twin had excess amniotic fluid around it. She sent me to see a fetomaternal specialist, at the Mater Hospital. The doctor felt that the size discrepancy was still within the normal range, however on my next visit at 19 weeks, she confirmed that they were suffering from twin to twin transfusion syndrome (TTTS). This scan showed that the smaller twin had very little fluid around her, she produced very little urine from her kidneys and had poor blood flows to her heart. The larger twin had a mildly enlarged heart because of the extra work pumping all the extra blood. The TTTS appeared to be at stage II (of I to IV).

The doctor discussed the problem and talked with us for as long as we needed. She explained that TTTS is caused by abnormal blood vessels on the shared placenta, which ultimately causes too little blood to one twin and too much blood to the other. Now I am a doctor myself, however, TTTS is not well known and understood by doctors not working in this area. I found my GP and my obstetrician would rely heavily on the direction of the fetomaternal specialists.

From this point I underwent twice weekly scans. At every scanning session the babies were constantly very active. In fact there was rarely a moment when they were still, which meant that the doctor had to chase them around to get their measurements. Especially important were the blood flow measurements, which required the babies stayed still, at least for a few seconds. Each scan often took an hour and I found them exhausting as I had to stay in one position for so long.

There were many nights spent crying as we thought about our little baby girls suffering inside.
My abdomen was uncomfortably tight, some days I felt like I was going to burst.
I did a bit of reading and had decided in my case to try and avoid amniocentesis as much as possible. Because it does not cure the actual underlying problem, and because my girls TTTS was getting quite seriously severe, I did not wish to risk the small chance of sac detachment from the uterus wall, and so preclude any possible intra-uterine laser surgery if that were needed.

The doctor had already been telling us about the possibility of laser therapy, as she could see the problem was getting quite severe.

By 23 weeks the blood flow readings were worse. For three days in a row the flows were reverse. The doctor felt the best prediction was that if nothing was done that the little one might succumb sometime in the next week, or even the next few days. Because in TTTS the babies are intricately connected by the abnormal blood vessels, if the little one died, then, we were told, the other twin may follow.

More and more discussions regarding laser therapy followed. The doctor’s unit had been equipped to do laser surgery for TTTS for some time – however, many of their referrals since that time were too advanced to offer the procedure. The doctor offered either to be her first case or to go to Florida to have the operation done by a TTTS specialist from overseas, who had been doing the operation for some time.

Complicating the decision was the fact that the little twin (Paris), had very little share of the placenta, even without the abnormal transfusing blood vessels. This meant that there was a possibility that separating the blood supplies via laser surgery may in fact cause a critical reduction in the little ones blood supply. Very complicated, even for us doctors!

My husband and I chose to have the laser surgery here in Brisbane under the specialist doctors at the Mater. So at 23 weeks I underwent intrauterine laser surgery, which involved a small porthole through my abdomen (next to my belly button) for the camera and the laser probe. The laser is used to block the abnormal vessels on the placenta. There were six (6) groups of vessels in my case. The last group were on the edge of the placenta and presented quite a challenge. When attempting to laser this group, the placenta began to bleed, the bleeding was difficult to stop and so the final part was abandoned, as they could not get a clear view anymore. In retrospect, our doctor wondered whether that was for the best as this group contained a vessel bringing blood from the big to the little twin. So we hoped that enough was done so that the little twin would be giving less blood to the bigger one.

My operation was quite long both due to the fact that I was our doctor’s first case, and due to the complicated vessels.

Unfortunately, I awoke from the operation feeling quite awful. I had lots of shoulder tip pain, a fever, vomiting, uterine tightenings and leg and arm numbness…all of which I prefer not to remember. However, I did not have abdominal pain. I went home after four days.

I then underwent daily, second daily, and then three times a week scans. It took a few days for the blood flows to show improvement. Basically, the transfusion is such a dynamic process it can change from minute to minute and day to day, so we had to see similar blood flows on a few scans consecutively before we could be more confident about the progress.

The following weeks were especially difficult. I was getting frequent tightenings and I knew that the babies were still too young to be given a go. This meant that if I was to go into labour and it wasn’t able to be stopped with medical treatment, then I would be allowed to continue in labour and the babies would either be stillborn or die soon after.

After two weeks the blood flows appeared markedly improved. The babies were growing along their centiles (3rd and 95th). Paris was weeing. Madison’s enlarged heart was stable.

At 26 weeks I was getting very frequent tightenings and possibly contractions. I had a show, which really made me worry that I might go into labour. Eventually the scans showed a marked accumulation of amniotic fluid. So after receiving some steroid injections I underwent amnioreduction. A doctor inserted a small needle into the sac and drained 2.2 litres. I think the twins were thrilled as they began kicking and punching my tummy even more vigorously with the extra room.

At 28 weeks, 5 weeks after the laser surgery the ultrasound showed deteriorating blood flows. If the sole problem with my twins would have been the TTTS and the operation was successful in blocking all the abnormal blood vessels, then I could have hoped that the process was reversed, and the pregnancy would go on to term. However, my twins had double trouble as I mentioned earlier, and now the little twin was outgrowing her blood supply. Our doctor arranged for me to have a caeserian section to deliver my babies. Three hours later, on the operating table, two gorgeous tiny fragile girls were held in front of me. I could hardly believe they had come from inside me. Madison was 1277g and Paris was 714g. Remarkably, they did very very well once they were born. They required very little oxygen, caffeine, ventilation or parenteral nutrition. Paris was the weaker one in our case and she stayed back in ICU longer.

The following 12 weeks they went from intensive care to special care and then home. They are now 8 months corrected (10 1/2 months) and doing all they are meant to be doing… and more. Paris does have feeding problems, basically, she isn’t interested in feeding! …So she has her milk put down a nasogastric feeding tube.

We are so thankful and grateful to our God that we have them with us to cherish and love.

From Paris and Madison’s Parents
March 2003

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(c) 2004 TTTS Australia Inc.