TTTS and identical twins – not what I was expecting.
It was two weeks before my 17th Birthday when I first found out I was pregnant. A week after my birthday, at six weeks pregnant, I discovered I was having twins, it was a big shock. I had no twins in my family and I didn’t even know people my age COULD even have twins!
At 14 weeks, I began to have fortnightly scans to measure the fluid levels around the twins. They didn’t tell me why, so I thought that was just routine for twins. Looking back, now I know that they were watching because of the TTTS.
At 18 weeks pregnant, I changed hospitals due to moving out of the area. A letter was passed to the new hospital telling them about my scans but it was 6 weeks before a scan appointment came through. By this time I was 24 weeks. At my scan, I met the consultant. After the scan he sat me down and told me that there was more fluid around one baby than the other and that he wanted to test me for diabetes and that I would need weekly scans. Still no mention of the twins having TTTS.
A week later, those results came back normal, but by this point I could hardly breathe. I couldn’t sit up to eat a meal as I gasped for air and the only way I was comfy was lying on my left side. When I went for my scan, that week (25 weeks) the consultant picked up on my breathlessness and size – I was bigger than 42cm (same size as an overdue singleton mum!). He admitted me to hospital with a chest infection.
That evening, I felt slight twinges and midwives sent me straight down to labour ward. I was put on a drug to stop what ended up being contractions and given steriods to mature the babies lungs, just in case. After 48 hours, I was sent back up to the ward.
At 26 weeks, I was reading through my notes and noticed a page entitled, TTTS – Management Protocol. I was confused, what was TTTS? No-one had told me anything!
Exactly 1 week after being admitted, I fainted in the bathroom and contractions began again. I was given pethadine which helped me to sleep and they eased off.
At 27 weeks I was able to go home on the condition that I had constant bed rest but attended 3 times a week for scans. At one of these scans I was told the level of water around one baby was 13cm and the other was 0.2cm. My smaller baby was ‘cling filmed’ in her own sac. He said I would be lucky to reach 30 weeks.
At 28 weeks, the consultant did the scan and then called me into the office which was odd as he hadn’t done that before.He said that the bigger baby now had a collection of fluid under her skin (hydrops) which is an early sign of the beginnings of heart failure. Her heartbeat was weakening and he said he would need to deliver ASAP.
He called the 3 local hospitals. None had 2 intensive care incubators ready that day. Our hospital would have to move some babies around but would have some the following morning. So I was told that I would have an emergency c-section the next day. I was not allowed to leave hospital that afternoon, I was on the monitor constantly.
I didn’t sleep at all that night. I hadn’t bought ANYTHING, I had no nappies, no clothes, not a thing for them! I hadn’t expected them for months!
The twin girls are born
At 11 am the next morning, my c-section began. At 11.16am, Twin 1 – Lauren Olivia – the recipient twin was born weighing 2lb 12.5oz, followed at 11.17am by Twin 2 – Megan Louise – the donor twin who weighed just 1lb 15.5oz.
I didn’t even catch a glimpse of them as they were rushed off to the NICU. I was seriously ill after the operation, I lost too much blood and required a transfusion.
I got to see them when they were 5 hours old. They were bigger than I expected them to be but they were amongst a tangle of wires, tubes and monitors.
They had a breathing tube in their nose called a CPAP (Continuous Positive Air Pressure) to help them breathe so I couldn’t see their little faces.
I couldn’t even hold them, I could just touch their tiny hands.It hurt that my nurses had held my babies before me but I knew that them precious seconds were the difference between life and death.
I asked when they would be allowed home, they said roughly around the time they would have been due – that was 12 long weeks away!
We spent their 1st Christmas in NICU (aged 7 days) which was hard. Nobody dared buy them any gifts just in case they didn’t pull through.
Lauren, the bigger twin was the sickest – she developed a serious infection in her bowel and then her lungs collapsed from her trying to breathe too hard!
She ended up sedated, on a ventilator which was hard to see.I got to hold them on the 29th of December, 11 days old, it was a very special moment.
I was expressing my milk but because I had delivered so early, my milk didn’t come in fully and after 7 weeks, my supply dwindled to nothing. I’d tried and although I felt guilty for bottle feeding them, I was proud that I had been able to give them even a little bit of milk!
After 6 weeks, both twins weighed over 3lb 5oz and were able to go into a normal cot together.
The babies come home !
At 9 weeks old – Twin 1, Lauren came home weighing 5lb 5oz and 2 weeks later at 11 weeks old – twin 2, Megan came home weighing 5lb 2oz.
The days and nights became a blur of nappies and bottles.It took about 8 weeks after the twins came home to get into a routine. It was tough but I made sure I fed both twins at the same time, even if it meant waking one twin up. I’d tried feeding them separately but I found that I was constantly feeding a baby and I was exhausted.
I still had no information on what TTTS was, so I googled it and found it was called Twin to Twin Transfusion Syndrome. It was only when the twins were around 6 months old that I discovered just how SERIOUS the condition was. I didn’t know anyone my age who had twins and none of the twins who were in the NICU when we were there had TTTS, just us. Still the doctor’s never explained to me about what TTTS was.
Because of the size difference between the twins, which is common with TTTS, people used to think they were non-identical twins, and almost insist that I was wrong! I knew differently because I’d been told they were identical!
It was tough at first, getting out used to take forever but I tried to make sure that we got out everyday, just for some fresh air.
People used to ask me (still do really) how I coped…. well…. I HAVE to. I have no choice! You just find your own way of doing things.
Like my girls now are VERY patient, they realize that mummy only has 2 hands and that sometimes they have to wait their turn.They also know the value of things. If a toy isn’t big enough to share or cheap enough to buy 2 of, then they don’t have it, simple as that. They are grateful for everything that they have.They also are great at entertaining each other. I can get ready most mornings in peace because they are happy to watch a dvd together or play with their toys.
Now they are older, they are looking more alike and it still has people in awe when we walk by! Anyone would think they haven’t seen twins before!
Ive also recently discovered that my girls are mirror image twins!!!
Its hard but the years fly by in a blur. They are coming up to 4 this year and it scares me that time is rushing past.
Regardless of the TTTS – these are my Miracle babies.