OUR HEALTH EXPERIENCE:Babies were born at 28 weeks after a high-risk pregnancy, write ANDREA DERMODYand SEAMUS HANLEY
IN FEBRUARY of 2009, my husband Séamus and I found we were going to have a difficult pregnancy. We were told it was a mono-mono pregnancy, which meant a difficult and high-risk pregnancy.
Twenty weeks in, we were told they had twin-twin transfusion syndrome and one of the girls would not make it. Their veins and arteries were cross-wired in the placenta, so one twin was getting more blood than she should. She was growing bigger, while the other twin wasn’t growing quickly enough.
For the smaller of the twins, the doctors said there was a 60 per cent chance she would die. If that happened, there was a 15 per cent chance the other twin would die and a 15 per cent chance she’d be handicapped if she lived. I visited the special unit for pre-term babies in the Coombe hospital just before the birth and some of the babies were around the size of the baby we were going to have.
We knew the twins would be early. Mono-mono means one baby can strangle the other as they grow, so the doctor said the latest they would let it go was 32 weeks. But we were lucky. Our GP was fantastic. They made it to 28 weeks.
On July 17th, Alexandra was born weighing less than 1lb (0.45kg). She suffered a difficult birth. Taylor was born weighing 2lbs (0.9kg), but experienced more difficulties because of an enlarged heart.
They were born at 11.23am and that evening the paediatrician said Taylor was probably was not going to make it. Before the birth, the smaller twin Allie was at risk, but now it was Taylor. She had three cardiac arrests that night and had to be revived.
Twin-twin meant Taylor’s heart was too big for her body. She had been pumping blood for two and the medical staff struggled to regularise her heartbeat. My husband was told to say his goodbyes to Taylor. But the following morning she was still with us.
Allie was doing well. The smaller twin does better once in an incubator. And we saw they were getting fantastic care. Allie was in for 18 weeks and Taylor was in for 16 weeks, until October 8th. A lot of the experience is a bit of a blur. I remember them being sick, getting infections. I remember that they did get progressively better.
It was a complicated pregnancy from the beginning. In the intensive care unit, you ring a bell to see your own baby. When you are not there, you feel you should be. And when you are, there is little you can do.
Their skin is so fragile. As soon as possible they allowed us to hold the babies. They can feel your heartbeat and smell you, and that reassures them. Allie was so tiny – like a little apple – you’d hardly know you were holding her. Some days we couldn’t hold them and that was difficult.
I always knew they would be in intensive care. But you have an incredible amount of guilt, when you are at home and they are in the hospital.
I’d gone home after five days. Going home without a baby is not how it is supposed to be. We would ring every morning. When we got in, the nurse would give us the rundown.
We remained positive and my husband Séamus, who is a great GAA man, would always say that we were still in the game. We needed to hope. The medical staff had a role to play, but our job was to hope. We always believed that they would make it. It went on for 18 weeks.
One of the hardest bits was learning to hold and feed such a small premature baby. Premature babies have to learn their suck reflex and you have a fear of feeding them. You worry that they will choke when you get home.
When you get out into the community, GPs don’t know a lot about pre-term babies. They don’t know the fear we live with that they might pick up a common cold and it will kill them.
They are still smaller than full-term babies, but they are doing well. We still go into the support group run for pre-term babies and their parents by the Coombe staff in their own time.
When we first went, we were encouraged to see twins born at 28 weeks; they were running around laughing, aged two, and that gave me hope. Talking to their mother gave us the hope that we’d do those things – that would eventually be our babies.
The hope that came when the babies were still in an incubator was invaluable. Now we make sure to attend every month even if the girls haven’t been well. It gives us a chance to talk to mums and dads going through it now. “Look at our girls now and they are running about,” we tell them.
I have to say with my hand on my heart it was a 100 per cent positive experience regarding the care our babies got. That is the reason the babies are still alive, as well as the support we got afterwards. Having the nurse’s number and being able to call her made such a difference.
This year, we helped organise a fundraiser to give something back through Friends of the Coombe. We’re now planning for the mini marathon.
In conversation with Anthony King
