Super Sadhbh

STRONG Parents tell of journey of daughter’s treatment for cerebral palsy

“I have one here,” Amanda Corcoran is scrolling down through the image gallery on her phone. Over the last hour she outlined the pertinent details from the first 10 years of her daughter’s life.

The most recent was Sadhbh Corcoran’s treatment in the National Orthopaedic Hospital at Cappagh (NOHC), where she underwent limb lengthening to address leg inequality.

It’s a traumatic surgery, but essential to address issues resulting from Sadhbh’s cerebral palsy, a condition diagnosed shortly after her birth. The procedure was necessary as limb length discrepancy affects walking, causing pelvic imbalance and scoliosis, resulting in additional surgical procedures.

Amanda arrives at the picture she’s looking for. Her little girl is dressed in a Supergirl costume; blue, red and gold. She also has metal external scaffolds around her lower leg.

The mother holds up the phone: “That’s our super girl,” she says with pride.

In the last decade Amanda and husband Shane have become experts in cerebral palsy. From neuroplasticity to hemiplegia they immersed themselves in the vocabulary of their daughter’s condition.

Sadhbh is playing in her room with friend, Zoe, while the discussion takes place. Amanda goes to get her child, Shane recalls tasks both parents undertook after the Cappagh surgery. Cleaning the 18 wires and pins where the fixator frame was attached to his little girl’s leg and foot: “Amanda was amazing, is amazing,” but the acknowledgement speaks of the partnership of care.

“Sadhbh was born here in Cavan General seven weeks early,” Amanda recalls. “I had severe pre-eclampsia. In order to save both our lives she was delivered early. She was born healthy and well. Small, but well. She spent three weeks in SCBU (special care baby unit).”

Diagnosis

Five weeks after leaving hospital Amanda became worried when her baby developed a shake in her leg: “At first I thought it was nothing. She’s a new born, it only happened every so often, like when you touched her toes.”

Though reassured after an early development appointment, something nagged at the the mother: “I couldn’t put my finger on it. I felt I knew something was wrong, but I wasn’t asked about anything that could highlight my concern.”

Baby Sadhbh always had her left hand in a fist. Her left foot turned out. When a GP referral brought the Corcorans back to hospital they were reassured everything was fine, but Amanda was insistent: “I was saying, ‘No, no, not fine, I don’t think she’s fine’. I said I’m not leaving until I see the consultant. I sat there for an hour.

“The consultant came in, took one look at Sadhbh and said, ‘She might have cerebral palsy, we better get her checked out’. That was it,” she recalled.

Cerebral palsy is the most common motor disability in childhood, affecting 1.77 in 1,000 live births in Ireland. Early diagnosis and intervention is essential for the child to reach their potential in life. Parents play a crucial role in determining how the condition affects the child in the long term.

An MRI allowed a Temple Street neurologist to confirm significant damage to the right hand side of the brain: “There is nothing to reverse it, the damage is done, but you don’t get further brain damage. Investigation showed Sadhbh had a stroke at around eight weeks. It can happen in babies that are premature. It’s not uncommon, but it’s not typical either,” Amanda explained. “We were told to prepare for her not being able to walk or talk.”

The normal anxieties of parenthood were magnified by the condition with both parents attuned for the signs of seizures: “She never had one,” Shane tells, “if you reach the age of seven without having one you are at the same risk of seizure as everyone else, but until she was seven we were watching and waiting.”

“There’s a lot of things to keep an eye out for,” Amanda adds.

Predicting outcomes from brain damage in early childhood is more difficult than in a fully formed brain: “In the early years it’s so unpredictable. There is so much brain activity, so much brain development left. It’s easier to predict what will happen next in a fully developed brain than in a small child.”

The cerebral palsy diagnosis led to engagement with Enable Ireland, the non-profit state-funded organisation providing services to children and adults with disabilities and their families: “When she turned one year old she started with Enable Ireland doing physio and OT. Every week she had something. It was full on. They were really good.”

The parents played a crucial role in Sadhbh’s development: “We focused on occupational therapy, on physiotherapy and later speech and language therapy,” Shane says.

Amanda took the option of job sharing, because she felt meeting her daughter’s needs while being a full time teacher was impossible: “The damage is significant, but it is only on one side of the brain. I think her outcome is better than what we could have expected.”

Comfortable

The parents put Sadhbh’s resilience down to her Supergirl qualities. Therapeutic massages, stretching exercise became part of a daily morning routine right up her surgery.

School is not problem for Sadhbh: “Intellectually she is fine. She’s in third class in St Clare’s and gets on well. We’ve worked really hard with her over the years to help her,” her dad tells.

The normal everyday hurley burley of childhood is no different for Sadhbh: “She’s not less than anybody else. She still wears the splint on her leg and arm. We never tried to hide it,” Amanda tells, “so far she is very comfortable with it, but there’s a long way to go yet. Other kids are used to seeing it. ”

Before surgery the young girl enjoyed activities like horse riding and swimming: “Cavan Sports Partnership do great work. We have been involved in a couple of their programmes. It would be great if she could participate in a team sport, but her restrictions in movement prevents it. It’s not the be all and end all.”

The Cappagh (NOHC) limb lengthening programme Sadhbh embarked upon is a combination of the surgery and wearing the fixator frames for months after her surgery.

“She hasn’t been out in months, but she has great friends around the estate,” Shane says.

“Because of the surgery she is struggling to walk for the last couple of months. She is using a wheelchair in school. We hope that will come to an end in the next couple of weeks,” the mother tells.

So determined

Sadhbh is still growing, but this is factored into the programme: “They work it into the calculations. Her leg was 4cm shorter, and they have only lengthened it by 3cm,” Amanda says.

Surgeon Dr Enda Shanahan and consultant trauma and orthopaedic surgeon Shane O’Neill oversaw the programme. In addition to the pain and discomfort of wearing a fixator frame, clothing options for children with fixator frames are non-existant.

This can be difficult for children facing big events, such as communions, confirmations, and graduations. Sadhbh’s progress has been positive: “It’s only off three weeks now, so it’s still at the early stages of it,” the the mother states.

“She is so determined,” Amanda’s sotto voce emphasises the truth of the statement. “She is so strong. She is not a complainer. She will put up with a lot of stuff.”

“Physically she will put up with anything. She didn’t mind the prodding and the needles or the seven hours of complex surgery. She is awesome, but it has taken a toll on her emotionally. She has experienced the same deprivation every other child has as a result of the pandemic, then on top of that she has been her on her own, but she is getting better and better all the time.”

Sadhbh has a busy summer ahead, with holidays in Disneyland Paris, and Center Parcs among the highlights: “She deserves every bit of it. I think getting out and playing with her friends is one of the things she is most looking forward to,” Shane tells.

The parents are unanimous in their assessment of the procedure: “It’s hard to watch your child going through something like this, but you do it for the hope of a better future for them.”