Our twin pregnancy (part 2)

A bit of background information about TTTS:

Twin-to-Twin Transfusion Syndrome (TTTS) is, as I understand it, a shift in the balance of blood flow from the placenta to each twin. In monochorionic diamniotic twin pregnancies, up to 25% may develop this condition although the exact cause remains unknown. The two babies have their own amniotic sacs, but the placenta nourishes and supports them both, and their blood supply is essentially shared. Although each baby has its own umbilical cord, some of the blood vessels that branch into the placenta might cross over and allow blood to flow from one baby to another.

The twins (or higher monochorionic multiples) may develop harmoniously, without the shared blood supply becoming a problem. In some cases, TTTS is triggered and research is currently ongoing as to why this happens. Many TTTS support websites try to reinforce the suggestion that is is not hereditary or due to anything the mother has done, but I do wonder!

Kangaroo care with premature twins

As TTTS progresses, the "donor" twin does not get enough blood as it flows to its sibling, growth becomes stunted and urine production slows down. The amniotic fluid around this baby reduces, and the baby may even become "stuck" to the membrane of the amniotic sac. On an ultrasound scan, the bladder will be small or even absent from view. The "recipient" twin will grow bigger with all the extra blood, but it needs to produce more urine so the bladder grows very large. Often the first sign of TTTS is the polyhydramnios, or excess of amniotic fluid around the recipient twin. The excess blood can put a huge strain on the heart and brain of the recipient, leading to heart failure or blood clots.

Basically, this condition is no good for either baby and treatment is quickly needed. Tom doesn't really want this blog to focus on where we have come from, more to think about where we are going, but our experience with TTTS is still a relevant scar on my heart. From the point of diagnosis to bringing our boys home 11 weeks later, it was such a terrifying rollercoaster. I don't really want to dwell on things either, but i'm half way through writing this now. Let us compromise and i'll write a summary!

Following on from where "part 1" left off:

We had to fight hard to get a follow up scan the next morning at our local hospital. We had to be really pushy to get referred for treatment that same day. Our hospital did not have the facilities or expertise to treat TTTS, and our nearest large hospital could not see us for 3 days. I knew that it would be too late. Thankfully, I had called my wonderful mother (who is good at being a little bossy!) to come to our appointment, and soon the doctor was calling all around the country to find someone to treat us. 8th call.... someone in London could see us but we had to leave immediately.

We zoomed over to London, with Tom at the wheel and my mother there with us. The consultant saw us right away, and said that the condition was progressing so rapidly that if we had left treatment another 12 hours and we would most likely have lost both boys. Using a very long needle in my belly, and with us all watching the screen unable to take a breath, he pierced the membrane between the babies to alleviate the discomfort of the poor, stuck donor twin. He drained over 3 litres of excess amniotic fluid to take the strain off the recipient twin. I spoke to an expert in the USA who advised bedrest and increasing my dietary protein.... things settled for 10 days.

We were being closely monitored, and I had frequent scans to check on the health of the babies, but eventually the blood flow in their brains became worrying and delivery was deemed to be the best option.

Problem: no beds in any NICU in central London due to overcrowding and norovirus outbreaks.

Miracle: there were 2 intensive care beds available at our local hospital.

We zoomed back over there, and got put on the waiting list for a c-section.

It was the most agonizing part of it all for me. Our consultant in London told us very seriously that the boys needed to be delivered within 24 hours, yet I kept getting bumped down the waiting list when another emergency case came through. For those hours, I was not of this world. I was either temporarily insane, or in a trance, or possibly my brain had turned itself off in part. It was torture. I had midwives trying to prepare me for the idea of delivering dead babies. I had doctors gently explaining that the donor twin was estimated to be 750g and possibly too small to survive even if he was alive at delivery. I was in severe pain from the rapidly increasing polyhydramnios. Yet they kept us waiting and waiting and waiting for 26 hours.

Even now, writing this, I feel emotionally spent. We were so lucky. It was the happiest moment of my life when my first born, our little stuck donor twin, was delivered by a careful surgeon, and gave a small cry... I didn't expect to hear anything, so when I heard that tiny bleat my poor heart did a somersault. Our second cherished boy was born 2 minutes later and did eventually start breathing with some help. They both clung on to life. I have never bought a lottery ticket, because I don't need to.

Daddy with his twin sons, 11 weeks early

1004g and 1172g. 29 weeks gestation. Tiny, vulnerable, fragile and in safe hands. Not my hands.... but at least they were alive. I didn't actually meet my babies until 8 hours later, although Tom stayed with them, and occasionally came to update me and show me a video he had taken.

Born at 29 weeks

We did eventually meet, and bond, and so began my parenting journey.