Three years OF TEARS
The White family speaks openly about their difficult journey after their youngest daughter, Sophie, was diagnosed with hip dysplasia at the age of six weeks surgeries Sophie had to have numerous
Before Sophie was born the White family consisted of “the three musketeers” – Ben, Eunie and their four-year-old, Lauren. The trio loved the outdoors and spent every opportunity picnicking, going for walks and visiting friends. Sophie, who was born with hip dysplasia, changed the family’s dynamics significantly. This is Eunie’s story.
A Mother’s Instinct
I have polycystic ovarian syndrome (PCOS), which can make falling pregnant difficult. It took Ben and I nine years and three months to fall pregnant with Lauren, and three years of trying for another baby before we conceived again. Sophie entered the world on 12 May 2011 and just hours later I instinctively knew there was something wrong with my little girl. Every time I changed her nappy one of her legs would shake and she wouldn’t stop crying, but when a specialist paediatrician came to see her he insisted she was perfectly healthy. Six weeks later I still felt something just wasn’t right. I made an appointment with a paediatrician that I had worked with during my nursing agency days to get a second opinion. He took one look at Sophie’s hip and could tell right away that she had congenital dysplasia of the hip, otherwise known as CHP. After scans and X-rays confirmed the diagnosis, we were referred to a private physiotherapist and a splint was applied on Sophie. The splint holds the legs in a near-180 degree angle and is designed to assist the joint to start to mature.
It was heartbreaking to see Sophie in the splint, knowing how uncomfortable it was for her (there is a rod at the lower back which links to two leg straps that hold the legs in a “froggy position” over a period of time). It’s not easy looking after a child in a splint – it changes how you hold and feed your baby, and changing a nappy and other simple tasks take twice as long. I was told I could not bath Sophie and this devastated me the most. Bathing is such a great time to bond with your child and I really missed it. It was as if someone had ripped my baby away from me. While the splint is successful for many children with CHP, it failed in Sophie’s case.
Having a baby that is unwell changes how you function. We couldn’t go out as much as we wanted to – Sophie was an unhappy baby and screamed all the time. Some days it was just about survival. I’d often go for a drive to clear my head and end up parking somewhere and crying while hugging the steering wheel. Watching your child go through surgery after surgery is really tough. You wish you could take it on yourself. I was sure at the time people thought, “It’s only hip dysplasia, how bad can it be?” I can vouch that it is a complicated condition if the treatment doesn’t go as planned. In most cases six weeks in a splint is adequate. For Sophie it has been much more complicated.
We were advised that the splint failed because of how shallow Sophie’s hip socket was. The surgeon said it did help to some degree – just not enough. At the tender age of just ten weeks, Sophie’s hip came out of the splint and she was then booked for tenotomy surgery, where the adductor tendon is cut to release it. She was then placed in the splint again. This did not work and her hip came out a second time. At the same time I lost my brother – who died in a scuba diving accident – so it was an incredibly stressful time for all of us. At 14 weeks, Sophie was booked to have another tenotomy, and then a hip spica cast (used to immobilise the hip) was applied. Sophie had the spica cast on for 24 weeks. When she was about nine months old she had her cast removed and then was put into a rhino cruiser (a different kind of brace), which she had to wear night and day for about 12 months. All this treatment finally seemed to be working and for the first time, Ben and I really believed she was going to get better.
Sophie started walking when she was two. I will never forget the moment she took her first steps – it was a milestone we had longed to experience. We thought the nightmare was over when, in November 2013, I noticed Sophie was walking with a limp. I made an urgent appointment for her to see her surgeon and after more X-rays he confirmed our worst fear. Sophie’s hip had come out again and he told us she needed an innominate osteotomy, a more invasive surgical approach where the bone is cut and reset. In this procedure, surgeons take a segment from the hip bone and graft it to make a socket and then apply a full body spica cast, which runs from the ankle to just below the armpit.
I cried all the way back to the car after hearing this news. The thought of my beautiful two-year-old girl having to have this was devastating for me. I really didn’t want her to be operated on again, but I started looking at the statistics of these surgeries and found out as much as I could. The more I looked into it, the more I realised I had to allow her to have the surgery. If I didn’t she could end up with an arthritic hip, while if I did she could be cured. We had to try this surgical approach.
After thinking about it, we decided to go ahead with the innominate osteotomy. Sophie had the surgery on 12 February 2014. The hardest thing I have ever done was to walk her into the operating theatre for the surgery, knowing that because of it she would not be able to walk or move the way she could before. At her age, there was no way we could explain what was going to happen to her in a way she would understand. Two minutes before the surgeon scrubbed in I stopped him and asked him if he would be going ahead with the surgery if Sophie were his child. He replied emphatically: “Absolutely!”
Sophie came out of surgery a real trooper, and she has coped better than her parents! Her surgeon says that she’ll Many parents find that swaddling can provide comfort for fussy babies, reduce crying, and develop More settled sleep patterns. however, improperly swaddling too tightly May lead to, or exacerbate, hip dysplasia. when in the womb, the baby’s legs are in a foetal position with the legs bent up and across each other. sudden straightening of the legs to a standing position can loosen the joints and damage the soft cartilage of the socket.