My little hipsters Evelyn & Chloe – Evelyn’s DDH story – Guest Post by Brooke Nicolosi

evelynBeing a first born, female, breech baby with genetic predisposition ticks all the boxes for potential hip problems. We ended up ticking 3 out of the 4 (first born, female past history in the family). Eve’s hips were thoroughly checked at birth and there was no detection of DDH. Being a first time Mum my focus was on trying to establish successful breastfeeding, have a content baby and a good sleeper! (Not asking much really!!!). I then started to attend my regular maternal health checks. We had settled into a really nice routine, the hard work was paying off, Eve was just a gorgeous, happy and ever smiling baby. I felt so lucky and I was loving every single minute of this new & ever changing journey of motherhood. Just when things were going so well they also turned bad so fast. We attended our 4 month health check and the nurse said “I am a bit concerned, I think your daughter may have Hip Dysplasia”. I remember at the time feeling a total state of panic, shock, deep concern and “how am I going to not ball my eyes out during this appointment”! We were then referred to get an Ultrasound to get an exact diagnosis and see if in fact Eve did have DDH.

6 picEve was misdiagnosed at 4 months and we were advised that she was fine, no sign of DDH despite me pleading to reconsider being we had the family history. When we returned for her 6 month Maternal Health Check I was asked why I hadn’t followed this up, as she was still presenting clear signs of DDH. Straight away I was referred to our pediatrician who 5 days before Christmas had the horrible task of telling me my perfect little girl had a bad case of DDH. Two days later on the 22nd December our appointment to get Eve’s rhino brace fitted was arranged. I shed tears like I have never cried before, and I clearly remember being a mess on the way to the appointment and driving as slow as I could, making time drag on and for her to not have to be in her brace. I drove home and went around to get my beautiful girl out of the car and when I opened the door, this gorgeous face was beaming at me, oblivious to the fact her movement was now temporarily restricted and her Mum had tears streaming down her face.

Our life with the Rhino cruiser was about to commence, in fact for a far longer period of time than we had anticipated and were informed of. Eve was to be in the brace 24/7 and we were initially told it should rectify itself within 3 months. I thought, we can get through this, 3 months will fly past. After the first week alone it felt like 3 months, my beautiful, content, happy and great sleeping baby was utterly miserable and I felt totally helpless.

4 pic car sitShe could no longer work out how to sit up in the brace, regressed quite dramatically which is normal and her sleep, well what was that! The first few nights Eve would wake screaming after 45-60mins every single hour. She was in tears and so was I and my husband. After many sleepless nights, I racked my brain to work out how on earth to make her comfortable so she could get some rest and much needed sleep, and it was from here that I just decided I needed to deal with this and be there for her 150% and we would do whatever it took to ensure she is comfortable and back to being our happy girl again.

It was a lot of trial and error but after a lot of research, hard work and persistence things started to pay off and our gorgeous little smiley Evelyn was back!

Truly, kid’s resilience amazes you, whilst we as the parents are doing it tough seeing them trying to work out how to do things they previously could, they just get on with it and astound you each and every day. Eve continued to do this during her DDH journey and despite the restrictions she crawled, rolled, climbed up to our couch and eventually walked in the brace. She also attended care during the time she was in her brace and this only encouraged her more. I would arrive to collect her and find her holding the carers hands and jumping on the mini trampoline or on the rocker squealing her head off in excitement, she wasn’t going to let the brace and not being able to walk properly stop or hold her back in any way. Her determination was above & beyond as too our admiration of her during both times she was in her brace. We also found that despite the physical restrictions that held her back her speech and hand/eye co-ordination excelled and she really worked on these assets rather than letting the brace hold her back.

Eve was regularly monitored and at times it felt like all I was doing was taking her for ultrasounds/x-rays and seeing her orthapaedic surgeon, then in June 2012 I felt like this was all worth it. He gave us the news we had been wanting to hear for those long 6 months “She’s doing great, her hip is where it should be and she can now come out of the brace”. I think I could have done back flips and cart wheels coming out of that appointment I was ecstatic, our baby girl was going to have freedom to move about but most importantly start to stand, and walk, I couldn’t wait. Eve still needed to be checked regularly as he mentioned to me prior to leaving that there are a tiny percentage of children that do regress for no known reason and have to go back into the brace or worse still surgery and be fitted into a spica cast. I don’t know what it was but instantly my elation turned sour and I just thought “why did you have to tell me that” I will now worry and wonder if that will happen and deep down it was like I had a gut instinct we would travel this road again.

Four months later in October, I was at work we had been to have Eve’s follow up x-ray and the results went straight to our surgeon. It had been a few weeks since her x-ray and I hadn’t heard anything so assumed no news is good news. Then my mobile rang and it was her surgeon, straight away by the tone of his voice I could sense something wasn’t right. Then I heard these words “I truly am so sorry Brooke, but Eve’s hips have regressed and I’m not happy with this and we need to get her refitted into another rhino brace urgently”. My heart sank, I didn’t know whether to cry or scream and instantly like a protective lioness over her cubs, I got upset, angry and frustrated at him which thankfully he understood. I am sure over the years he has had worse and many a tearful, emotional mum taking their frustrations out on him. After the anger had subsided and asking him “why” so many times, I burst into tears and sobbed uncontrollably and told him I would call back I just needed time to digest this.

3 picHere we were our darling Eve was 17 months, the process was that difficult at 6 months how on earth do I get an active toddler, a far more mobile toddler to go through this all over again.  When Eve was braced the first time I allowed myself 24 hrs. of self-pity, feeling sorry for myself and “why me” and cried and cried to I couldn’t cry anymore. After this 24 hour period I told myself I need to snap out of it and be there for Eve and get through this hurdle…………..again! With time and some clearer perspective I could see that yes this is another obstacle along the way, but it could be far worse and we will get through this with lots of love and support for our Evelyn.

So “D Day” arrived, the day we needed to have her fitted with her new brace. It was like she knew what was awaiting her, the minute we arrived, my happy go lucky girl was upset and didn’t want to go in. The sobbing turned into hysteria being fitted and I will never forget the car trip home. I had my mum in the back seat with her and Eve was wailing, totally inconsolable. I couldn’t think straight, she was so distressed. I had to go to the shops and get a few things and like most of us girls it seemed a bit of retail therapy with a cheeky cupcake thrown in cheered up my little princess! Before I knew it she was laughing and smiling again. To my amazement and more so surprise Eve was quite the opposite in how she dealt with the brace to how I imagined. I was petrified of all the regressions (sleep, development etc) but Eve being Eve just went about things in such an admirable manner and before I knew it was crawling, laughing and standing in her brace and next stage was becoming a maniac on her bike which soon became her “legs” and her freedom to move about and keep up with everyone else.

Again with our first experience of Eve being in her brace, we had trying moments and some tough times. There was times of feeling sorrow and blaming myself for this was it how I carried her during pregnancy that caused this, no one wants to see their child go through anything. But like most things despite the hardship and tough times, we got through this, and with perspective can see that yes this wasn’t easy but in life there are far worse things and some irreparable unlike a clicky hip.

Becoming a first time parent and going through this made me even stronger than I imagined I ever could be, and with hindsight and knowing the outcome of how perfect our Eve is now, its irrelevant that she was almost 2 by the time she walked.  She proved that despite starting these things later in life she’s now going to make the most of it and I love seeing what a beautiful ballerina she makes, seeing her running outside pretending to be wonder woman, dancing and singing, seeing her enjoying these simple things makes this experience all worth it.