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

Your Baby & Toddler - - Real Life - By Vanessa Pap­pas

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.

OUR JOUR­NEY

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.

First steps

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.

Fi­nal SURGERY

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.

So­phie with her MOM And sis­ter Lau­ren

So­phie play­ing while in HER splint

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