For the past seven years Sinead and Chris Breen have tried to tackle all the challenges faced by their daughter Mikaela’s condition of spina bifida in a positive way.
Now they face the greatest challenge so far in deciding on surgery which will eliminate the health risks to Mikaela’s compromised kidneys but could reduce her mobility.
However, Sinead and Chris, from Lifford, Co. Donegal are determined to remain positive and make an informed and rational decision on surgery for their daughter to ensure she grows up as healthy, mobile and independent as possible.
Sinead explains that Mikaela, who will be eight next January, was born prematurely and it was initially thought that she had issues with her tail bone which would resolve when she put on weight.
“However, following an MRI, Mikaela was diagnosed with spina bifida. It was like being hit by a bus, we were not expecting to be told that but just had to deal with it,” she says.
“The hardest part was that we did not know if she would ever walk; that was the hardest part of the diagnosis. When Mikaela was 19 months, she started to take a step or two with a frame.
“She had a turn in her right leg, it was frustrating for her, but boots and physiotherapy corrected this. She still has a weakness in her leg, but you would not know she has a slight turn.”
Mikaela gets out of breath easily and becomes fatigued very suddenly with Sinead explaining that it is just like “flipping a switch”.
“We used to carry Mikaela in a buggy but by age seven, we were told that she really needed a wheelchair,” says Sinead.
“She adapted brilliantly, much better than we did. She is very resilient; we were horrified when we heard a wheelchair was needed but it has proved a Godsend to us all.
“We can now go on family trips and shopping trips. We embrace it now to be honest as it has given the whole family – including Aleesha Jane (9), Tiernan (6) and Christopher (2) - greater independence as we can go to more places.”
Mikaela has a tethered spinal cord - this occurs when the spinal cord is attached to tissue around the spine, most commonly at the base of the spine. As a result, the spinal cord can’t move freely within the spinal canal. This can cause the spinal cord to stretch out as the spine grows, leading to possible nerve damage, pain and other symptoms. In most cases, the condition becomes worse over time.
“Mikaela’s tethered spinal cord is the biggest challenge we are facing because as she grows, it does more damage. Urology is our biggest concern as her bladder, kidneys, and bowel are compromised,” explains Sinead.
“We now have to decide on surgery for her tethered cord. There is the risk of mobility damage but it will help urology wise.
“It is a trade-off. We have to decide what is the right thing to do, weigh one against the other. We need to assess the risks and we need to do it as soon as possible.
“We are hoping to take Mikaela to America before Christmas for tests - you have to wait years for them here in Ireland – so the only option is to take her abroad to be seen by one of the best teams in the world.
“This is our greatest challenge and we hope to make a more informed, rational decision after the tests as we will have the risk percentages.
“She cannot keep going the way she is, so we might have to take a risk with her mobility as she has to have healthy kidneys to live.”
While growing is presenting Mikaela with a lot of challenges – she is having a lot of falls and experiencing pins and needles in her legs, so she is using her chair more to contain the pain – she is very positive.
“Mikaela is such a happy perfect child. She is amazing, so loving and affectionate; a treasure. She is a tough cookie and very resilient,” says a proud Sinead.
“She hates catheterisation as she has mobility she feels it more than other people with spina bifida who may not have sensation.
“However, we try to tackle everything positively; you have to look at life as glass half full. When we go to Temple Street Hospital, we know we are one of the luckiest families.
“There are so many other families with greater challenges. If they can keep positive, why should we not be? You cannot pity yourself, you have to suck it up and get on with it.
“Surgery will transform Mikaela’s life and I want her to be as independent as she can be.
“I want her to strong willed as well and do things for herself but she needs healthy kidneys for that.”