My experience of being a dad to a deaf child
Christian, dad to Isabelle (5) who is severely to profoundly deaf and has additional needs, tells us how he juggles full time work with the needs of his family.
This story featured in Families, our quarterly magazine for members.
When new dad Christian held his baby girl in his arms for the first time he couldn’t have imagined what would unfold over the following weeks.
“Isabelle failed the newborn hearing screening but we were reassured it was most likely the result of debris in her ear canals,” says Christian. “It did hang a dark cloud over what was a beautiful occasion – the birth of our first child. But we thought our worries would be put to rest when Isabelle had an Auditory Brainstem Response (ABR) test ten days later.” Instead, Christian and his partner Helen were told Isabelle had a permanent bilateral sensorineural hearing loss.
Things became even more complicated when the couple started investigating the cause of Isabelle’s deafness. Despite being told it was most likely a genetic cause, urine and blood tests revealed she was carrying Cytomegalovirus (CMV), one of the most common causes of permanent deafness in children. "Isabelle had an MRI which showed changes to her brain, and we were quickly referred to Great Ormond Street Hospital (GOSH) where Isabelle was put on an antiviral drug called Ganciclovir,” Christian says.
It was a massive shock and Christian admits it almost made the deafness seem insignificant. “CMV has such big unknowns; it can causes progressive hearing loss and all sorts of disabilities,” explains Christian. “It was very challenging in the beginning. The drugs weakened Isabelle’s immune system, meaning our friends and family couldn’t visit.”
Isabelle got her hearing aids at three weeks and luckily took to them well. Another breakthrough was finding out about the The Elizabeth Foundation, a charity that prepares children for mainstream school. “Isabelle started attending from four months and she loved it,” remembers Christian. “It was a great support network for us – we met people going through similar things. But it was a two hour journey each way, so just after Isabelle’s first birthday we moved from London to Surrey, reducing the journey time to 40 minutes and meaning that I could commute to London for work.”
Because of the CMV, Isabelle was being closely monitored. “Helen had noticed that Isabelle’s tongue was always sticking out, and was concerned about it,” remembers Christian. “She discussed it with the paediatrician who suggested it could be due to Worster Drought Syndrome (WDS), a form of cerebral palsy causing problems with swallowing, feeding, talking and other actions controlled by the mouth and throat. We were referred to a neurologist at GOSH who confirmed the diagnosis. This opened up a whole new wave of emotions, not knowing what the future would bring. Isabelle’s fine and gross motor skills are affected so she can be quite clumsy, but the biggest issue is with feeding as she can’t control her tongue and is at serious risk of choking. She needs one-to-one care when eating.”
“It’s difficult missing out on certain things”
Life has become even more of a juggling act since the arrival of Isabelle’s younger siblings, Beatrice (2) and Edward (five months). “It’s hectic having to balance the needs of all our children. Having three means we now have to make a more conscious effort to set aside special one-to-one time. I religiously leave work on time so I can make it home for the build up to bedtime,” says Christian. “It’s difficult missing out on certain things as I’m out of the house for a large part of the day, but I take comfort in the fact that the children are in great hands with Helen as a mum. What has really helped me over the years is talking through my situation with employers and friends. You never know how accommodating your manager might be with regards to flexible working hours. And some of my friends really surprised me with the way they reacted and the level of support they gave me."
Christian is optimistic about Isabelle’s future. He says, “She’s a happy-go-lucky little girl – sunny natured, sociable and determined. I think her future will be purely dictated by what she wants to achieve. If there’s ever a barrier I’ll do whatever I can to help her remove it.”