TWIN LOSS (AND TTTS)

This week is Baby Loss Awareness Week and to mark it I am very honoured and also sad to share one of my best-friends stories. Polly and I have been mates since we were 19. My second and her first were born within weeks of each other. I loved sharing that journey with her. So when Polly announced she was pregnant again a couple of years later. My first reaction was disappointment that we were no longer in sync. And then joy; she was having twins – what a miracle!

Unfortunately from there things didn’t run smoothly. Her pregnancy was tough. And those darling babies didn’t make it home to join the crew. The worst imaginable thing to watch your friend go through. As I say, a total honour to share Polly’s brave words:

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• Do you have twins in the family? The sonographer asked at our 7 week viability scan. This was the day we found out we were having twins. Identical twins. They were in the same sac.
• I cried. I cried a lot. Twins! We had 2 year old boy already how on earth would we manage?!
•  After few days of freaking out big time we started to feel a nervous excitement. How bloody special.
• We researched double buggies. Fitting 3 car seats in a row. I joined a twin pregnancy chat group. Jesus. Twins plus one toddler. I had never considered ever having 3 children.
• The 12 week scan came and sure enough they were still there. The BOTH of them.
• BUT there was a size discrepancy. One was measuring ahead of the other. We were referred to a specialist twin consultant. The scan revealed that the babies were monochorionic diamniotic (MCDA) twins, meaning they shared a placenta.
•  One twin had a greater share of the placenta we were told. It’s likely one twin may not survive. Come back at 16 weeks and we will know more.
•  4 weeks of hellish waiting to see if our littlest baby would make it.
•  At 16 weeks both babies were still going strong. Although they still had a size discrepancy. We found out they were boys. We were going to have 3 boys under 2.5 years. Wow.
• We learnt about a condition called twin to Twin Transfusion Syndrome (TTTS) a disease of the placenta that affects identical twin pregnancies who share a placenta. With TTTS the donor twins blood flows into the recipient twin but doesn’t come back round.
• We started TTTS watch with fortnightly growth scans. Each scan filled me with fear I wanted both of them to be ok. The relief after each scan was amazing.
• The hope the dreams came closer with each scan BUT the anxiety levels would build up towards the next scan.
• Each week my boys were doing great. Then at 24 weeks there it was. TTTS. My smallest twin didn’t have much fluid around him and the bigger twin had lots. This is a symptom of TTTS. Gutted.
• We went to Kings to have the laser surgery which could separate the blood vessels and the un-equal blood flow. But it was risky. The chance of one baby or both babies dying during the procedure was big. The risks of the surgery after 26 weeks equalled that of delivering early. Because the blood vessels link the twins’ circulatory system together, death of one twin could result in a major drop in blood pressure for the other twin. The blood pressure can drop so low that the healthy twin can suffer brain damage or even die.
• They decided to hold the surgery. Watch. Wait. See if it stabilised.
• My stomach was growing rapidly. The huge volume of fluid around the recipient baby (the bigger baby) was stretching me. My skin was painful. My bump solid. Inside I was crying out for them to do the surgery. If they didn’t do it surely I would burst?!
• Then at 24+5 I did just that. I burst. My waters started to leak and my stomach was cramping.
• I went into labour ward and they gave me steroids and drugs to try and stop labour. It was terrifying. We met with NICU nurses to discuss the risks of having such premature babies. And the long uncertain road that would lay ahead in NICU.
• The contractions seemed to calm down. Phew. We waited. But then my pulse went through the roof and my heart felt like it was going crazy. Something was wrong. Very wrong. Doctors came running I was pumped with antibiotics. Sepsis. Shit.
• As time went on and my health and life became at risk the decision was made to deliver the babies.
• Me and my partner sat quietly. Waiting for the induced contractions to kick in. I was scared. But also excited to meet my little boys.
• I laboured. Then in the early hours of the morning they were born. Alive but tiny. So tiny and so fragile. Too fragile for this world. They both died in my arms a short while after birth.
• My boys Ray and Fred.
• We spent time with them. Took pictures. When the time came to say good bye my departing wish was that nobody must separate them. They must stay together. Forever. And they did.
• We went to visit them at the mortuary. I wasn’t sure if I wanted to go but I was glad I did. They were together Ray the bigger twin had his arm around littlest Fred. They were led in a white Moses basket.
• The days, weeks and months after are a blur. Complete grief and devastation.
• It’s hard for people to know what to say and how to support you. My house was filled with amazing flowers and kind words in cards. My family came to cook and take over the day to day tasks and help with our little boy.
• A friend got us a magnolia tree which we planted with our boy on the day of their cremation. It flowers each year on their birthday and we tie little notes on it. It feels so good to have that as a focal point in our garden.
• After a few months me and my partner found SANDS @sandscharity where other people who had lost babies in many different circumstances come together to talk through experiences and feelings. It was a total life saver and we realised we were not alone in some of our struggles.
• My twins were so special. Twins are so special. I crave them. I now see twins everywhere and it hurts.
• Since losing the boys I have had a little baby girl who is helping my heart.
• Being pregnant after loss is a minefield (a whole other list!).
• I will tell anyone who will listen that I am a mother of 4 children. I love seeing their names together Rudy, Ray, Fred and Vita. My gang.