Raising awareness of Spina Bifida and Hydrocephalus is very important, both to educate the general public about the conditions and to help take the fear out of the initial diagnosis for new parents.
So believes Caroline Lafferty from Killybegs in Co. Donegal, who is mum to eight-year-old Jamie, who has Spina Bifida and Hydrocephalus. With her husband Stephen, they undertake as much awareness raising as possible in their area.
“Spina Bifida and Hydrocephalus are no longer unknown words in my area. Everyone knows that there is a boy (Jamie) who has Spina Bifida and it is not the end of the world as he is a happy wee man, living his own life,” says Caroline.
“It would have been nice to have known this when we found out that Jamie had Spina Bifida and Hydrocephalus, that while, yes, he will always have these conditions, he can get on with life.
“Raising awareness will also help to educate the public over the conditions. After we received Jamie’s diagnosis, people were saying to us: ‘I know someone who had that (Spina Bifida) and I think they passed away,” says Caroline.
“Then it would come to light that the person they were talking about had another condition altogether. People always spoke with good intentions but it was not helpful.”
Jamie attends Dunkineely National School near Killybegs where he is now in second class and is getting on very well. He has the assistance of an SNA and keeps his Crocodile Walker in school during the week to help him when he is playing in the yard – however, he rarely uses it at home.
When Caroline was 32 weeks pregnant, a scan in Letterkenny Hospital showed that something was wrong. However, medical staff there were unable to make a diagnosis and Caroline and Stephen were referred to Holles Street Hospital in Dublin.
“We had to wait four to five days for that appointment which was horrendous as we had no idea what was wrong at that point – I wondered was I going to have a baby at all.
“Holles Street confirmed that Jamie had Spina Bifida but they were more concerned about the Hydrocephalus at that point as they said it was quite severe. They said things like: ‘not enough brain matter’, intellectual and cognitive impairment,’” recalls Caroline.
“I did not know what to think; I could not even say the word Hydrocephalus at the time. It was all like mumbo jumbo.”
The plan agreed with Holles Street was for Caroline to go home to Donegal and to come back in four weeks’ time for another scan and then a delivery date would be decided.
“I went home and tried to stay off the internet! It was a scary time. Then I went into labour early and I had Jamie in Letterkenny Hospital.
“It was a really positive birthing experience. I had four weeks’ lead in time to it; I had been prepared to give birth to a baby with Spina Bifida and Hydrocephalus,” says Caroline.
“There was no sadness involved and it was a relief to finally meet this little person. In the clinic in Holles Street when we went for the scan to confirm the diagnosis, we thought we were in the ‘bad news scan’ clinic as everyone there had tissues and were upset.
“When they told us the diagnosis, it was very matter of fact and run of the mill. In Letterkenny Hospital, maybe because it was in the country, everyone was ready, prepared, and waiting for me when I went in to give birth.
“It was not run of the mill and it was a very positive experience for us.”
A few hours after Jamie was born, he was transported by ambulance to Our Lady’s Hospital for Sick Children in Crumlin with Stephen and his brother following by car. The following day, Jamie had surgery to have his back closed and Caroline was able to get to Dublin shortly after he came out of surgery.
“It was a rollercoaster, my head was all over the place but I can still remember the huge sense of relief and that the massive worry was no longer there,” she says.
“The huge concern over the Hydrocephalus was not there in Crumlin. I thought they should be moving quickly to put in a shunt but they said they would wait and see. Six days later, they sent us home to Donegal with no shunt and eight years later, Jamie still does not have a shunt.”
Caroline and Stephen always questioned the doctors if Jamie would ever walk but none would be drawn until one doctor said: ‘Oh, I won’t see you back here until he is up on his feet’.
Between the Spina Bifida and having Hydrocephalus, Jamie struggled with his balance and meeting his developmental milestones but he eventually reached them all.
“Jamie is very much his own man and his own character,” says Caroline.
“Maybe I have the same worries as any parent but I worry about him completing his education; I worry about the potential disappointments and his long term health issues and mobility.
“I worry about him developing scoliosis. The Hydrocephalus will never go away and I worry about him needing a shunt at some stage as he does get headaches.
“He appears quite well and he is quite well, but he is still affected by Spina Bifida and Hydrocephalus.”
The advice Caroline would give to parents who are about to have or have just given birth to a child with Spina Bifida and/or Hydrocephalus is that it is not necessarily something to be afraid of.
“We were very much afraid for a long time. I think that Jamie was two-and-a-half before I dropped the absolute dread sitting on my chest about what would happen next,” she says.
“Yes, there are a lot of appointments, checking and monitoring, and everything has to be planned, and you have to be very organised – you cannot do things spontaneously. But it is not something to be afraid of.”
The strength you gain to deal with your child’s condition comes, says Caroline, not from your doctors, family or friends but from other parents of children with Spina Bifida and/or Hydrocephalus.
“The strength comes from people who have been where you are. A lot of people want to be helpful and be there for you, but unless they have your perspective, it is not the same,” she says.
“I would advise parents who have a child with one or both of the conditions to reach out to others in a similar situation for support and strength.”