When Emma Elbourne and her husband Phil discovered they were having twins they were shocked and then delighted.
“When the doctor told us there were two heart beats I couldn’t believe it. There are no twins on either side. I was worried how I was going to cope but I wouldn’t have it any other way.” Everything went well with the pregnancy until she was out for a meal with Phil and her parents on her birthday.
“I suddenly needed the loo desperately and suddenly my waters broke.”
Emma had gone into labour nine weeks prematurely and the twins were born at 4am the following morning.
Ava and Louie weighed 4lb 1oz and 4lbs, and had to spend nearly a month in the neonatal unit at Hull Royal Infirmary receiving specialist care. Louie, the smaller of the twins spent more time in Intensive Care and the High Dependency Unit and had to be put on a machine to assist him with his breathing, but after two weeks he joined his sister in the Special Care Room.
“It was the most traumatic time I have ever experienced, going into labour so early, then not been able to hold your babies and seeing them all wired up in incubators. It was horrific,” recalls Emma, 32, from Hull.
“I couldn’t go into Louie’s room when he spent time in the High Dependency Unit without my husband going in first, I was so frightened that something might have happened to him. We didn’t get to see Louie’s face for a week due to him having to wear a mask to help him breathe.
“When my husband left the hospital on the nights when I was still admitted on the maternity ward I would cry all night, I didn’t have my babies in my arms. I still get flashbacks now.”
Emma and Phil were desperate to have their twins home. But just nine days before they were due to be discharged they received the devastating news from the neo-natal paediatrician that routine ultrasound scans had revealed that both Ava and Louie had developed cysts in their brains, which were likely to have been caused by their prematurity.
The doctor told them that this would most likely lead to cerebral palsy. A diagnosis which tests later confirmed. Cerebral palsy affects co-ordination and movement and is caused by damage to the brain.
They were told that the severity of the condition would not be known until later on, but they were informed that Louie’s injury was more extensive than Ava’s. The doctor broke the news that the ‘worst case scenario’ could be that the twins would be wheelchair users and have very complex needs.
“The shock of the diagnosis was difficult to accept, our babies seemed to be doing really well in hospital and the news felt like being hit by a bus,” says Emma.
“I can’t remember getting home that night and my husband had to call for an emergency doctor as I had a anxiety attack. What made things so difficult was the fact that Ava and Louie were still in hospital so we didn’t have them for comfort.
“It sounds terrible, but there was definitely a period of grieving for the life that we were expecting with our first children, and without the support of our amazing family and friends I really don’t think we would have got through it. We would wake up in the morning praying that we had just experienced the most horrific nightmare, but it was real.”
Although Emma admits she was slightly in denial she did get comfort from a parents’ on-line forum run by the cerebral palsy charity Scope.
“I’ve found chatting with other parents on Scope’s online parents’ forum to be really helpful, it’s so much harder to talk to people who haven’t been through something like this themselves,” says Emma.
Despite all their problems Ava and Louie are now one, are doing well and this week started nursery.
“When we were told the worse case scenario we really thought we were going to be left with two babies who could do nothing, but that just isn’t the case. It is very much a waiting came but we have two lovely happy babies who give us so much love.”
Louie’s condition affects all four limbs and Ava’s lower limbs only are affected. However, these are rapidly improving with the help of regular physiotherapy sessions, and they also have on-going support from Occupational Therapy as well as the community paediatrician.
“Our consultant at the hospital is really pleased with how they are both progressing and Ava and Louie are giving us the answers, positive ones, on what the future holds, we have never experienced happiness like it, they are wonderful and although they have obstacles in their paths they are two determined little people.
“We still struggle and there are times we really have to fight with the black cloud that’s overshadowing all our lives, the uncertainty is hard to manage at times.”
Just before Christmas Louie developed epilepsy.
“At the time we weren’t sure what it was and it was so frightening seeing our child in this way. We had been told due to their diagnosis they could develop epilepsy and now unfortunately Louie has.”
Ava has been fitted with splints to wear on her lower legs to help her movement in her lower limbs.
“But we are more positive now, and milestones in their development mean so much to us. Ava is now sitting up and rolling over, and Louie has just started to roll and his sitting is improving,” says Emma.
“ We celebrate all their achievements, even if they might seem small to others, they are unbelievable and we are so very proud of them.”
Emma, who works part-time at Hull City Council, has been so inspired by her twins and by the help and support she has received from Scope that she has decided to give something back.
Despite her hectic lifestyle she has decided to run the Virgin Money London Marathon to raise money for the charity which has helped her and her husband cope. “I love running and I find it very therapeutic,” says Emma.
“Although we still have to an uncertain future to some extent, we are blessed each and every day with Ava and Louie, they are our beautiful children and each and every day they make us so happy, they truly rock our worlds and the love we have for them is just indescribable.
By taking part, Emma hopes to raise £1800 to help Scope to provide support, advice and information to more than a quarter of a million disabled people and their family members every year.
“I am inspired everyday by my two beautiful children. Thanks to our friends, family and Scope we no longer dread the future, nor the words cerebral palsy.”
To sponsor Emma visit http://uk.virginmoneygiving.com/EmmaElbourne