A long but promising road for Ciara

CIARA Donnellan turned one last Friday and celebrated the day with her family and friends in Tulla. To look at this happy, bubbly baby, the pride and joy of her parents, Sharon and Michael, you wouldn’t think there was a thing bothering her.

However, baby Ciara and her family have travelled across Europe and back over the past six months after she was diagnosed with a rare condition known as hyperinsulinemia.
The condition, which affects one in every 50,000 babies born, relates to the over production of insulin by the pancreas. When diagnosed, the community of Tulla and friends and relations of the Donnellan family came together and fundraised to help baby Ciara.
Speaking to The Clare Champion on the Ciara’s first birthday, her mother, Sharon, outlined the journey they began in March that has thankfully resulted in treatment for Ciara and how much the support from the community of East Clare and Ennis has meant to them.
“When Ciara was born, this day last year, she had low blood sugars. They just thought that it was because she wasn’t feeding enough so we were to feed her more and if she got a score of above three on the blood sugar meter, then we could go home. She got 3.1 and so we ran out the door and we didn’t think anything of it,” Sharon explained.
She added that after about eight months, Ciara got a sore throat and wouldn’t feed or drink her bottle and over the space of five days, the life drained from her.
“She had no energy, she’d only wake and she’d be crying or she would only sleep. So I brought her to the doctor in Tulla and he said to bring her to A&E but when I brought her there, they couldn’t actually see anything wrong with her. They thought it was a viral infection and they said, ‘off you go home and she’ll be fine’,” Sharon outlined.
After five days had passed and Ciara was no better, the Donnellans returned to A&E, where tests revealed that her blood sugars were very low with a reading of 1.1, any lower, Sharon said, “you’re nearly in a coma”.
Ciara was immediately put on a drip and a number of blood tests were carried out, which resulted in the diagnosis that Ciara had hyperinsulinemia.
“This means she has too much insulin, so it is like the exact opposite of diabetes. I’d never heard of such a thing. It is very rare and it either shows up in babies when they are born or when they get to eight or nine months when they stop drinking so much milk and start eating more but are not able to retain the blood sugars,” Sharon said.
When a course of treatment wasn’t showing any major improvement in Ciara’s condition, she was transferred to Our Lady’s Hospital for Sick Children, Crumlin where they started her on a course of injections.
“We spent about four weeks on the rainbow ward in Limerick and then she was another three weeks in Crumlin. But Crumlin really weren’t able to manage her either so they decided to send her to Great Ormond Street in London because one of the best doctors in the world with this condition, Dr Khlaid Hussain is based there. So we got Brian Cowen’s private jet over to Great Ormond Street,” Sharon revealed.
She explained that such was Ciara’s condition that she was too sick to travel conventionally and so they availed of an arrangement Crumlin have in such circumstances where they were flown on the Taoiseach’s private jet.
“I thought it was going to be better than it was, but it was so good for us because we pulled up in the ambulance and were 42 minutes in the air. And when we got off the other side, an ambulance collected us and brought us straight to the hospital so we didn’t have to queue with bags or anything.
“When Ciara was in Crumlin, she was really bad. It was probably when she was at her worst. But once we got to Great Ormond Street, we felt we could relax. We got to the rainforest ward which has two beds assigned to kids with H.I (hyperinsulinemia). When we arrived, there was a baby from Poland, baby Sofie, who had arrived two weeks ahead of us, so her parents told us loads of stuff. They did a hypo-screen where they take away the drip and everything and wait to see how low her blood sugars go or how fast she’ll get a low.
“They did loads of tests and from the tests, they determined that there were two types of the condition she could have. One of the types is diffused where you have it all over, where all of your pancreas is squirting out too much insulin. The other type is a focal where there are just one or two little spots that are squirting it out,” Sharon explained.
Following more tests, the doctors believed Ciara’s was leaning towards a focal but they sent Ciara to Berlin for a more accurate scan.
“We had to go there because the scan you need uses a radioactive dye and that’s the only place near us where they make it. So the dye is made up at 10.30am in the morning, and it has what’s known as a half life which means that it deteriorates every few minutes. Great Ormond arranged for an air ambulance to bring us from London to Berlin so we flew with a team called the CATS (Children’s Accessible Transport Service) team. A doctor and a nurse came with us and brought Ciara all the way over to the hospital in Berlin,” Sharon said.
Following the scan, the results showed that Ciara has the diffused type where it is all over and surgery was not an option.
“It was a shame for Ciara but the doctor did say that when she gets older that some babies grow out of it. But because it’s so rare and all the babies are so different, they can’t say for certain what will happen, they just don’t know,” Sharon outlined.
The family flew back to Great Ormond Street where they spoke with Ciara’s doctor on a course of treatment and she was put on an intravenous medicine.
“She has to have four injections a day of this medicine. We’re trained in doing it now so they started her on the medicine and everything went well and we were able to leave Great Ormond Street on July 11. It was a long road since the first day she went to hospital on March 31 but we got over it,” she added.
While the Donnellans were away, the community of Tulla, friends, colleagues and family members rallied behind them culminating in a number of fundraisers.
Although the family were able to travel under the E1112 scheme, which covered Ciara because she could not have the treatment done in Ireland, Sharon explains that the funding raised by locals will be going towards Ciara’s continued care.
“Ciara will have to go back to Great Ormond Street in three months’ time and she will need to keep going back to Great Ormond Street at least once a year so the money will definitely be used for that because that’s not paid for now.
“We’ll be covered for our doctors’ visits but for flights and that, we won’t. But other than that, we will keep it for her because we don’t know what will happen, if it deteriorates then she can have a pancreatectomy but that would be the worst-case scenario. What they will try to do is manage on the medicine and so far so good, that seems to be working.
“When she grows then the amount of medicine will either increase or decrease but to be honest, we don’t know. Her doctor has said she will be able to live with this condition and if you see her now, you wouldn’t think that a thing was wrong with her.
“Everyone was just brilliant. They were great. I’ve met people, in the shop, since who ask how Ciara is doing and it’s just such a great place. We’re from Galway originally and we just feel so lucky to be living in Tulla,” Sharon concluded.