'We are so blessed and lucky to have baby Ethan with us': Wolstanton parents speak of heartbreaking decision over twins

WE got married in November 2011 and the twins were honeymoon babies.

At the 12-week scan the doctors told us we were having twins and there was a risk of developing twin-to-twin transfusion syndrome.

When we found out we were having twins it was the best day ever. We felt so blessed.

Then at 16 weeks we had a routine scan and found out one of the twins had spina bifida. We were absolutely devastated because we didn't know anything about it. At the time the consultant was absolutely brilliant in explaining everything. He said I can give you options, and one was to terminate the pregnancy. I think when you hear spina bifida you think 'Oh God' but it is completely manageable.

For us termination wasn't the choice. We were scared and we knew if we did have a termination we would lose the other baby as well. We had to think of all our children, including Fin.

At about 22 weeks, almost a year ago now, I knew I had the symptoms of twin-to-twin. I looked like I was ready to pop, I was in a lot of pain. Ethan had no water around him and I had a pain in the side where he was and I couldn't feel the other baby moving.

By the time I got to hospital I was hunched over in pain and could barely walk. We went to Birmingham Women's Hospital where they did the laser surgery to separate the placenta which was shared by the two babies.

At that point they gave us the choice of whether we wanted to clamp the umbilical cord to the disabled child to give the other twin a better chance.

But we had just got our heads around having a disabled baby and the spina bifida seemed like nothing by the time we were at that point.

They gave us a 40 per cent chance of both babies surviving, but if I had not had the surgery I would have gone into labour with them both and they would have died.

We had no choice but to have the surgery. You're awake, it's an epidural. They make a tiny hole in your tummy and they laser the blood vessels connecting the babies. Ethan had no fluid around him, he was shrink-wrapped in his sack and Elliot was surrounded by fluid. Elliot later died of heart failure because he was taking too much pressure on his heart.

We had to wait six hours before we could have a scan to see if we had both heartbeats. That was horrendous.

We went for the scan and they found two heartbeats and we were so relieved. It was Friday April 13 last year when we came home and then on the Saturday I didn't feel right. I'd felt Ethan move but not Elliot and I said to Luke we should make sure everything was OK.

They scanned us at the University Hospital of North Staffordshire and said Ethan had died. I kept saying 'I felt him move, are you sure?' and they said it was definitely the baby with the spina bifida. We went home and were completely distraught. Two days later we went for a routine scan, expecting Elliot to still be alive. They said sorry but it was the other baby that had died.

We just couldn't believe it. We had mourned for one baby for days and then all of a sudden we were mourning the other baby. We now had to get our heads back round having a disabled child.

A few days later my waters went and it was thought I was going into labour.

We got to hospital and they put us in a room they use when they know it's going to be still born. Staff came and spoke to us and said because I wasn't quite 24 weeks and because of Ethan's disabilities, and babies who are born that prematurely can have cerebral palsy or be blind or deaf anyway, they didn't think they should revive him.

I fell apart but Luke's always been so positive. He was saying 'it's not happening now Nik' even though I thought it was the end. Days later we went for a scan and found the waters had been replenished. We plodded on and booked a date to be induced at 37 weeks.

He was born the day before he was supposed to be induced. It was just the most wonderful delivery. It was so nice to be able to have him naturally. There were some complications after and the doctors had to prepare Ethan to be transported to Alder Hey Hospital for surgery. I had Elliot lying in the mortuary and Ethan on his way up to Liverpool.

Ethan was in a big incubator and I couldn't hold him except for a few minutes just after he was born.

It gave me an opportunity to see and spend time with Elliot. We had him blessed by a Priest and that afternoon I asked if I could go.

We went up to Liverpool and Ethan was in theatre. With all the complications after Ethan's birth it was the worst time of my life. About a week later he stopped breathing and went blue. I was convinced he was going to die.

When we came home from the hospital the reality of how much work we had to do was overwhelming.

We now go to Alder Hey most weeks because he had to have his hips scanned and his club feet fixed. He had to have a harness 24 hours a day and his feet cast. Each week we gradually turned his legs slightly. Now he's in his boots and bar and he will have them until he's four. That will keep his feet in the right position. He wore the pelvic harness for six months but he may always have problems with his hips. It was a shock to see my baby like that.

Our family are so helpful, I don't know what I would do without them. Finley is the best big brother in the world. He loves looking out for Ethan and playing with him. He's been brilliant.

Ethan will always need specialist care and equipment. We want him to play as normally as possible while he's young and live as independently as possible when he grows up even though he will always have the medical issues.

He's just mastering sitting up which is the most amazing thing.

Really this is a happy story because Ethan has come so far and he's done so amazingly well. It was so hard at first but it's getting the confidence to do medical things for him.

"Despite everything I wouldn't have him any other way. Each smile we think is the best smile ever because it's Ethan and you wouldn't expect him to smile as much as he does. When he laughs it's the best thing ever.

"We get a lot of sympathy about Ethan but we're really happy. I always think 'you would be so lucky to have Ethan in your life'. He's a blessing not a problem. Things could have been a lot worse.

We are so lucky and so blessed to have him and Finley in our lives.