Thursday 24 May 2018

'They said it was unlikely that our baby would survive and we were devastated'

Ahead of Temple Street's fundraiser, one mum tells our reporter how its experts saved her daughter

Charlotte Barker and her daughter Victoria, at their home in Athlone, Co Westmeath. Photograph: James Flynn/APX
Charlotte Barker and her daughter Victoria, at their home in Athlone, Co Westmeath. Photograph: James Flynn/APX

Arlene Harris

More than 145,000 children are seen at Temple Street Hospital every year and 55,000 of those are catered for in the emergency department, making it one of the busiest of its kind in Europe.

Diagnosing and treating a myriad of different conditions, the 95 consultants and 900 other staff members work around the clock providing a safety net for the children of Ireland.

But caring for the next generation is a costly business and funds are desperately needed for a new neurology and renal outpatients unit. So on April 15, hospital staff are urging everyone to host their own 'Bake Off' to help make this much-needed department a reality.

Great Irish Bake Off judge, Lilly Higgins is lending her support to the Temple Street Great Irish Bake which will help thousands of children get back on their feet.

Victoria Barker White is one of the patients who will benefit from the new unit at the hospital. Still only seven months old, the baby from Athlone nearly didn't make it this far as before she was born many medics believed she wouldn't survive.

But, mum Charlotte believes that thanks to experts at Temple Street, her much-loved daughter is alive and well.

"When I was 23 weeks pregnant, I went for a gender scan as I already have three sons - Joshua (6), Paul (4) and Thomas (3) - so I paid to have a scan as [her partner] Joseph and I wanted to find out," she says. "Everything seemed fine but at my routine 26 week scan, doctors thought they could see what looked like a cyst on her brain and said I should go to the Rotunda Hospital for another scan.

"Naturally we were very upset, particularly as when we asked if she would survive, they said it was impossible to tell.

"So after a very anxious 10-day wait, we got an appointment in Dublin for further tests which revealed that our daughter had a very rare brain condition and it was unlikely that she would survive - we were totally devastated."

Despite her baby having very low odds of survival, the mother-of-four was determined that she would continue with her pregnancy and hope for the best.

"Although both Joseph and I were distraught about it all, we wanted to do the best for our baby and that meant having all the investigations possible and sticking with the pregnancy until the end," says Charlotte. "I had lots of different tests, including MRI's and samples of amniotic fluid taken - this revealed that there was no genetic disorder present but our baby's cerebellum was much smaller than it should be.

"It was also thought that she may have spina bifida so we met with a specialist who referred us to Temple Street and it was there that we got our first glimmer of hope. Because after taking several scans, the consultant said that the brain looked intact and he was confident that our baby would survive so while she may have problems with her eyesight, balance and co-ordination, there was a good chance that she would make it."

Charlotte and Joseph were overjoyed with this vote of confidence which helped them through the final few weeks of the pregnancy until their daughter, Victoria, was born on August 24, 2015.

"Victoria was born in the Rotunda Hospital by caesarean section at 11am," recalls Charlotte.

"She had an Apgar score (the first test on newborns to determine physical condition) of between 9 and 10 which was really high and was also breathing on her own, which the medical team was surprised at. She was taken straight away to intensive care and because her heartbeat was very erratic, I wasn't allowed to feed her so she was fed by a tube. But she wasn't able to keep anything down and three days later was transferred to Temple Street where she had surgery to insert a shunt into her brain on August 27.

"This went well and she was then seen by a speech and language therapist who discovered that she had a problem with her swallowing reflex which is why she kept vomiting up her food. But as she wasn't aspirating her feed, it was decided that she would soon get the hang of swallowing - which she did and as soon as she was able to feed (about three weeks later), she was discharged."

But the little girl continued to have complications and endured more surgery and infections before she was even two months old.

"The shunt in Victoria's brain, which was inserted to drain off fluid building up, started to leak out through the wounds in her head a few weeks after we brought her home," recalls Charlotte.

"I rushed her to the local hospital which transferred her back to Temple Street. And it was there they discovered that not only was the shunt infected, but she also had meningitis - so she had to have the shunt removed, recover from the meningitis and have a new shunt put in in order to stop the leaking.

"It was a terribly stressful time and looking back I don't know how we got through it all - she was so small and had to put up with so much, but she managed to come out the other side and has been relatively well since then."

Today Victoria looks no different to any other baby but Charlotte says she is behind in her developmental milestones and requires regular monitoring by Temple Street experts.

"Anyone looking at Victoria would not know there was something wrong with her," she says. "She looks the same as a normal baby as she isn't disfigured in any way from it all. But if you put her beside another baby of the same age, you would immediately be able to tell the difference as she can't roll over and doesn't sit unaided - so she is about three months behind where she should be. But she is a great eater and seems to be thriving well.

"As far as the future goes, we can't be sure what will happen. Victoria will be assessed regularly and at the moment it seems that while she will walk at some point, she won't hit the same milestones as other babies the same age and she is likely to have problems with balance, co-ordination and eyesight. Beyond that, we don't have any idea what else is in store for her, but we are so glad she is with us as it seems miraculous that she pulled through, given the initial expectation.

"Temple Street has done an amazing job in helping Victoria to get where she is today. Despite having very limited funds, the work they do there is amazing and without them, I really believe out daughter may not have survived, so I would encourage everyone to do what they can to help with the Great Irish Bake as Temple Street is the reason so many babies and children like Victoria are here today."

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