Guest Post: Leah and Michael’s Story

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Leah’s Story

Our journey to parenthood

To fully understand our hip journey I have to start from the beginning. Each new complication or celebration just adds a new chapter.

I have always wanted to have a family so I was thrilled when I met my now husband Michael when I was 19. When we decided to start a family, we were told to start fertility treatments straight away as I have a rare medical condition where I don’t ovulate and don’t produce certain hormones. At the age of 16 my uterus was the size of a 6-year-old’s uterus. Michael is 11 years my senior and was also more than ready to become a dad. We were surprised to learn that the medication I needed to make my eggs fertile wasn’t yet available in Australia. Over the 18 months, 100’s of injections and blood tests were required, and I was always the youngest in the fertility clinic. I was constantly faced with judgemental comments about trying for a family and spending so much money on fertility treatments at my age. When the drug that I needed finally came to Australia I had two cancelled cycles as I had too many mature follicles: the risk of multiples greater than twins was too high. On the 3rd cycle I had 4 mature follicles. The risk again was high and we had both decided to focus on something else and have our dreams for a family continue in the background.

I was stunned when 10 days later on that cycle I had a positive pregnancy test. What should have made me unbelievably excited had me in tears from fear and anxiety of a higher order multiple pregnancy and the risks associated. Blood work the next day confirmed a pregnancy. It was still early days and my numbers were still fairly low. I would continue to have blood tests every 2 days to make sure the pregnancy hormone HCG was doubling. Although it was rising and my progesterone level was very high, it wasn’t doubling and I was prepared by the lovely staff that the baby may not have taken or it may be an ectopic pregnancy. I had an ultrasound at just under 6 weeks which showed a yolk sac but no heartbeat yet. My specialist advised me that it could go either way and we would just have to wait. I had been having a bit of cramping and back ache but everyone I talked to said it was normal in early pregnancy. One afternoon the pain began to get worse. I had some pain killers and made it out for dinner. By the time I got home the pain was becoming extreme. I lay down with a heat pack and started to fall asleep although now I think I was falling into unconsciousness. Michael woke me up to ask me something and the pain had become unbearable. I tried to walk to the bathroom but had to crawl on my hands and knees. Michael decided to call an ambulance and I was rushed to hospital.

We nearly lose our baby

When we got to the hospital the doctors attempted to do an ultrasound. This was the most painful experience of my life. They were whispering to each other and just kept saying they could see the blood pumping. They were talking about the amount of blood filling my stomach. I asked half conscious about my baby who still didn’t have a heartbeat or a foetal pole. They said the chances were not good and there was only 30% at best chance the baby would make it. I was rushed in for emergency surgery. When I woke in recovery I was not told anything. Panicking they had given me a hysterectomy I demanded answers from the nurse. He said he wasn’t supposed to tell me anything but he thought my uterus was saved but my ovary and tube was gone. Later I found out that my pregnancy was a rare heterotopic pregnancy (about 1 in 30,000). I had another baby in my right tube but it wasn’t visible on ultrasound due to enlarged ovaries. My tube had ruptured and they had pumped 1.5 litres of blood out of my stomach. I was borderline needing a blood transfusion but had full faith in my amazing specialist. While I was in hospital my HCG levels dropped and I started bleeding. My doctor sadly told me my body was trying to miscarry. The bleeding stopped at around day 3 and I had a small glimmer of hope. I began to feel sick and my specialist sent me home a week later smiling as she told me I had morning sickness. We still had a small chance. 10 days after the ordeal I went back to my doctor for an ultrasound. As I looked up at the screen I saw my little miracle’s heartbeat. We weren’t out of the woods yet but each scan the baby continued to grow and get stronger. That’s when I knew this baby was going to be the bravest person I would ever know.

Alexander is born

As a newborn his left leg would always go over to the right.

As a newborn his left leg would always go over to the right.

The rest of my pregnancy was fairly uneventful. I had to have blood thinning injections daily to prevent clotting as I have rheumatoid arthritis. I was also admitted to hospital with campylobacter.

My doctor decided it was best to induce me around my due date. I was induced on the 23rd July and gave birth to my son Alexander via emergency caesarean on the 24th July 2013. We were in hospital for a week with feeding complications and tongue tie but everything seemed fine and he was happy and healthy. We were over the moon.

Maybe it is the same for all parents but for us having been told there is a possibility you may never have children and then come very close to losing one you seem to celebrate and look forward to all the ‘firsts’. I would get excited taking Alexander to check ups with the MACH nurses. I remember once I specifically asked about his hips. I don’t know why as I had no concerns. The MACH nurse assured me he had ‘perfect’ hips. I thought nothing more of it as his hips had been checked multiple times by the various doctors and nurses. I had however noticed Alexander had started to develop a flat head. Michael has craniostenosis so we thought it best to get it checked. Our GP referred us to a paediatrician.

An unexpected and late diagnosis of DDH

We saw the paediatrician when Alexander was 4 months old. He assured us we had nothing to worry about with Alexander’s head. He did do a thorough check over of him. When he pulled his legs together he noticed a discrepancy in length. My heart sank as I could tell there was something not right. He then showed us that Alexander’s left hip was completely dislocated and showed us how it would relocate and dislocate. I was horrified. I will never forget what it looks like to see a hip pop in and out of its socket. I explained that I hadn’t dropped him or held him wrong so how on earth could it be dislocated? I asked if I had done something wrong during pregnancy. It must be the mummy guilt but I automatically blamed myself. The doctor explained that Alexander had Developmental Dysplasia of the Hip (DDH) and he considered it severe. He also asked us about his delivery, family history etc. Michael’s sister had clicky hips as a baby but that was all fixed with double nappies. He wasn’t breach, he didn’t have uneven creases, we never noticed any clunking, he wasn’t female, wasn’t over 4kg at birth, wasn’t overdue.  His only risk factor was being 1st born. We were referred to a specialist in Bowral. We were told that the specialist in Canberra had been deregistered. We had never heard of DDH and never in a million years suspected that Alexander had it.

Alexander's first cast after recovery (aged 4 months)

Alexander’s first cast after recovery (aged 4 months)

A week later we went on the 2 hour drive to Bowral to see the specialist. Alexander had had an X-ray and ultrasound to confirm the severity. The doctor said that Alexander would need a Spica cast. We were preparing for a Pavlik harness and had been frantically researching treatment for DDH. I was still in shock from the whole thing as a week earlier we’d had no idea he even had a dislocated hip. I felt guilty that I hadn’t noticed anything wrong and took the professional’s word. How did so many people miss a dislocated hip? What else had they missed? I was angry, sad and bitter. The only thing I had ever found unusual was that his length would change when he was measured. Once it was apparently 1cm shorter than the last. I realised that it depended on which side they measured him as to the length discrepancy. Sitting in the top of his cupboard were all the cute pairs of shorts, the jumperoo and swimming related presents we had bought him for his 1st Christmas and summer. I knew I would have to return half of them and I was purely devastated.

The spica is fitted

Second cast: he was always so happy!

Second cast: he was always so happy!

10 days from diagnosis we were driving to Sydney children’s hospital to have our baby put under general anaesthetic and have a closed reduction and Spica cast fitted. We had cherished every last bath since we found out. We even filmed him having a bath as it was his favourite part of the day and would soon be gone. It felt surreal handing over my seemingly healthy baby to a surgeon to be put in an almost full body cast. I knew it was necessary but I still hated every minute of it. Recovery was the worst. Alexander felt so heavy and bulky and I couldn’t hold him close. He was disorientated and upset. I couldn’t stop crying and tried my best to listen to the nurses as they explained how I needed to change his nappy, and explain his modified car seat. I was in a state of mourning. I felt I had lost part of my baby and that 12 weeks in a cast would be impossible. I cried the 3 hour journey home again. I naively thought nothing else would happen to us after everything we had been through to get him here.

Despite my feelings we quickly adapted to life in a Spica. We were amazed at how resilient and happy our little boy was. We celebrated his first Christmas and even drew a tree on his cast. He never once complained even though we reached temperatures of over 38 degrees in Canberra. His cast change 6 weeks later was a huge milestone. We were so proud of Alexander and ourselves. The hardest part about the Spica was the stares and comments from people who didn’t know or understand. A trip to the shops would take twice as long as people would ask what happened? What did we do to our baby? etc. The people who pointed and stared were the worst. I felt like wearing a t-shirt saying, ‘No I didn’t break my son’s legs.’

Into a Rhino brace

13 weeks passed and it was time to get the cast removed and be fitted in a Rhino brace. Alexander screamed as the saw cut through the cast but was still showing how brave he was. He loved the bath the nurses gave him and we finally had some normality back. I was still sad about what he had missed but things had to be better in a brace. We went for a review after 9 weeks in the brace. We had been counting down as we were told 12 weeks in the brace. Again we were wracked with disappointment. His hips hadn’t started to calcify yet and it was recommended at least another 8 weeks in the brace full time. Alexander had started to get upset when we put his brace on after nappy changes and once again we were devastated. People would say it’s not that much longer and it’s for his best interest. We knew that but after 6 long months we just wanted it to be over. We also knew it could be worse and the fear of all this treatment not working is always in the back of our minds. In his brace Alexander learnt how to move around and even roll over. Once again his bravery and resilience amazed us.

Cast off after 13 weeks

Cast off after 13 weeks

Alexander was set much wider in the brace. He didn’t fit in the stroller we had bought him anymore. Whenever we went out he wouldn’t fit in the high chairs. We had to try and modify where his legs went. People would still stare and one person asked me how I broke my son’s hips! Shopkeepers would ask us to put his legs together so he didn’t knock things over.

Alex was in a Rhino brace for our wedding. We were so excited he was able to wear pants for the wedding day!

Alex was in a Rhino brace for our wedding. We were so excited he was able to wear pants for the wedding day!

Brace-free at last!

After 13 weeks in a Spica and 16 weeks in the brace we are now brace free. I will admit that on his most recent X-ray I spent 3 hours in tears as I thought his hip had dislocated again. Thankfully it hadn’t but it shows how much anxiety there is as a parent of a hip baby. When the specialist told us Alexander could take his brace off we were purely elated. I cried tears of joy. We are just so proud of how strong he has been through the whole journey and how well we did as parents. I panic almost daily since the brace came off that his hip has dislocated as there is still a small chance. We can only pray he continues to improve. I’ve also been overwhelmed by the positive attention we receive from unknowing strangers. We are treated completely differently to when he had his cast and brace on and it is quite concerning how terribly parents of hip babies are treated.

Raising awareness

This is when I decided I needed to try and raise awareness of DDH. Not once was safe swaddling or baby carries mentioned in any appointments, handouts or hospital antenatal classes. People in the street assumed

He learnt how to sit in the brace

He learnt how to sit in the brace

that we had harmed our baby rather than him having a medical condition. I am still frustrated that it wasn’t noticed earlier. As I look through his checks the hip boxes are ticked as normal. Although Alexander’s journey is not yet over we have realised that this is our chance to raise awareness and help other families. We have met some amazing people along the way and made some lovely friendships. We are hoping that in the near future he will be able to catch up to the physical milestones he is yet to reach. We are hoping that at his check-up when he is 3 DDH will all have become a bad memory.

 

 

 

Michael’s Story: A father’s perspective on DDH

As a male who was worked for years in the childcare industry, I have been around kids for the best part of my life. But nothing compares to having your own and seeing their development. It really amazes me. I always wanted to be an involved Dad.

The difference in Alexander's leg length

The difference in Alexander’s leg length

We decided it was best to get Alexander’s unusually shaped head checked out. When the doctor showed us his hip dislocate and relocate I was in complete shock and disbelief. Just watching our poor baby being pinned down and his hip being popped in and out was shocking and something I will never forget. I didn’t know anything about hip dysplasia and I walked out of the doctor’s office with so many unanswered questions. I knew I was heading down an unknown road.

I felt upset that the doctors hadn’t picked it up earlier but I just decided to keep moving forward. This was really only the beginning of the whirlwind journey we have been on. I was a bit apprehensive about him being put in a cast and I was worried about the surgery. I just had to keep reminding myself that it was in his best interest. The worst part was leaving Alexander with the surgeon. I had to try and be strong because Alexander had no idea what was happening.

 

Because Alexander was our first child, life in the spica became our normal way of life. You just packed the nappies with the tabs ripped off and never thought anything of it. There have been a lot of frustrations and learning curves. I remember it would take so long to change a nappy and make sure it was in right. We just always tried to make the best of a unique situation. I tried to still do ‘dad’ things with him. I signed his cast and used to sing him ‘spica kid’ instead of ‘spider pig’. We just became creative with how we could incorporate things like water play. Having a background in children’s services helped immensely.

We went camping with him in the spica. We used                                                                 cloth nappies over the top to act as ‘pants’

We went camping with him in the spica. We used
cloth nappies over the top to act as ‘pants’

One thing that became frustrating was the stares. Some days it just annoyed the s**t out of you and other days you were just prepared and had back up stories such as skydiving accidents when it got too much. We are lucky that we have friends and family who are supportive. The most common question was how to change a nappy which was always amusing.

In a cast for his first Christmas

In a cast for his first Christmas

Living with a child with DDH just became our way of life. We adapted as we had to and made the most of it. At times it became tough when he was inadvertently excluded because he wouldn’t fit in a high chair. This wasn’t done intentionally but it was still hard to see. We still have many chapters to go in our journey but I just don’t want parents to think it’s the end of the world even though it seems like it at times. As long as Alexander is a mobile and happy kid who can participate I will be happy. You just have to have patience.

 

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Happy Havoc

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During the course of today I have found my 13-month-old daughter

  • merrily sucking on dog food pellets (fish and potato flavour)
  • removing every single book from her bookshelf and scattering them around her room
  • eating dried up carrot peelings from the kitchen floor
  • attempting to pull a bottle of wine from the wine rack
  • climbing into the dog’s bed and giving her cuddles
  • pulling clean laundry off the clothes horse and onto the floor (several times)
  • redistributing the contents of the kitchen cupboard all over the kitchen
  • wearing my lingerie on her head

and I can honestly say that I LOVE IT! I love that she is finally cast-and-brace free and motoring around the place causing havoc, making up for lost time. It’s as if the whole world has opened up to her and she is having the best time discovering it all.

The added bonus for me? She’s sleeping so much better and I can only attribute it to that delicious tiredness that descends at the end of a busy day filled with physical exertion.

I will keep this short as I need to get some sleep. Must be fresh tomorrow for another round of Chasing Lucy…

 

 

Sensory Learning Experiment #1: SPAGHETTI!!

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Thanks to the fantastic feedback to my post 20 Spica (and Brace) Friendly Ideas to Keep Babies Happy I am inspired once again to find fun ideas to try out with Lucy while she’s braced. A few people suggested sensory learning activities, including this simple and inexpensive one involving spaghetti.

Sensory Learning Experiment #1: Spaghetti

Aim: Keep baby stimulated and engaged while restricted in her brace by using cooked spaghetti

Hypothesis: She will have oodles of fun playing with noodles

Equipment: 1 x plastic tub; 1 x batch cooked and cooled spaghetti; 1 x camera

Procedure:

1) Seat baby at spica table.

2) Place protective cover over carpets in a 10 metre radius.

3) Check that the cooked spaghetti has cooled all the way through.

4) Present tub full of spaghetti to baby.

5) Step aside and start snapping pics while baby explores/eats/throws/wears the

contents of the tub.

Lucy tentatively prodding the spaghetti at the start of the experiment

Lucy tentatively prodding the spaghetti at the start of the experiment

 

 

 

 

 

 

 

 

 

 

 

Safety risks: Baby may eat large volumes of pasta and with this comes a choking risk.

Results: 1 x enormous mess; 1 x full but happy baby; 1 x full but happy staffy; 10 x priceless pics for blackmail purposes in 15 years’ time

My little noodle monster

My little noodle monster

Conclusion: This sensory learning activity is heaps of fun! Be prepared for a fair bit of cleaning up afterwards and only use this idea if your baby has been eating solids for a while and is unlikely to choke on the spaghetti. I was rather alarmed by Lucy’s capacity for eating pasta (something she has inherited from her dad!)

 

 

3 Months’ Full-Time Rhino Bracing – TICK!

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After the horrors of the dreaded spica, life with a Rhino brace for three and a bit months has been pretty painless. About a month in, Lucy learnt how to crawl around in it so the bracing hasn’t held her back in that regard. Some days we’ve even forgotten to take her out for her ‘happy hour’ because she has just been so content in the thing and we’ve come to peace with it too. 

This morning we went to the hospital with the usual mix of hopefulness and anxiety that comes from having thought our baby had conquered DDH only to find her hips had regressed and required further treatment. Our appointment today involved an X-ray and a verdict on whether she could reduce her bracing to ‘nights and naps only’. 

1405514324562The X-ray showed that the angles of her acetabula haven’t changed either for better or worse since she came out of the spica. The right acetabulum is well within normal range and curving nicely. The left acetabulum’s angle is slightly out of the normal range and needs to  curve more. Both femoral heads are sitting in their sockets as they should be. 

We’ve been given the go-ahead for Lucy to wear the brace for sleeping only and for a period of three months. If she is not tolerating it well then we must aim for a minimum period of six weeks. It is hoped that when she starts walking it will provide the necessary stimulus for the desired curving of the bone around the femoral head. 

We’ll go back for a check-up in three months’ time and if all is still on track then the appointments will be scheduled for every six months. Between the ages of three and five, the doctors will be able to assess whether the sockets are properly formed or if surgery will be required. 

I write this post feeling encouraged that my baby can now start catching up with her peers in her physical development but also weary because I know we’ve still got a few years ahead of us before we can officially close this hippy chapter that has taken up a lot of time and emotional energy in Lucy’s first year of life.

Having a celebratory coffee (and cuddles with Nanna) at Greens in Leederville after Lucy's appointment

Having a celebratory coffee (and cuddles with Nanna) at Greens in Leederville after Lucy’s appointment

 

The Chariot! (also known as Lucy’s new spica table)

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There are many reasons to be part of a DDH support group, one of them being that people kindly pass on their spica tables and other such useful paraphernalia once they have finished with them. I was fortunate to be lent a spica table when Lucy was in her cast but when she transitioned into a Rhino brace she no longer fitted into this table.

In the midst of teaching full-time and pretty much building our house full-time too, my amazing husband arrived home one evening having knocked together a custom-designed, compact and super-funky little table for Lucy, using scrap timber, nails and ingenuity.

It has become known in our house as ‘The Chariot’ and is used several times a day for meal times and other activities. To secure her on the seat, we simply use a strap from a weekend bag around her waist.

I highly recommend that if your baby is going to be in a spica or brace you get your hands on something similar or make it yourself if you’re a handyman. It has been indispensable for us!

 

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Guest Post: Christine’s Story

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A big thanks to Christine for sharing about her daughter’s journey so far with DDH:

 Our hip dysplasia journey started in March 2014 when our daughter was 5 months old. We had taken her for a check-up with our GP, who thought her hips seemed a little stiff and ordered an ultrasound ‘just to be sure’. The next few days were full of worry and fear of the unknown – what is hip dysplasia anyway? Would she need surgery? How would we ever stop a 5 month old baby from wanting to wriggle around and use the legs she had only just discovered belonged to her? And could we have done anything to prevent her from getting it in the first place?

Her ultrasound results weren’t fantastic; we were told that where a normal 5 month old’s hip should have an angle of approximately 60 degrees, hers were closer to 30 and she was diagnosed with Developmental Dysplasia of the Hip (DDH). She would definitely require some treatment, and was fitted then and there with a Pavlik harness to be worn 24 hours a day, 7 days a week. Unfortunately for us, this meant no bath at the end of the day which had been one of only a handful of foolproof strategies to calm our often cranky baby before bedtime! With no way of knowing how successful this course of treatment would be (given she was diagnosed and fitted at a relatively late age for the Pavlik harness to be successful), we were forced to ‘wait and see’, and a nervous and frustrating wait began until we could see a Paediatric Orthopaedic Surgeon and get his opinion on her progress.

After 7 weeks in the harness, her hips were greatly improved, although still not spectacular. On the recommendation of her specialist, she is now only required to wear her Pavlik 23 hours a day, and that one hour she has to wriggle around on her belly, chew on her feet and splash about in the bath is the very best part of our day. She will be reviewed in June and may then only have to wear the harness overnight, although for how long that will be required it is impossible to say.

Since starting this journey, we have discovered that we had several known risk factors, as well as a previously unknown family history, before she was born; she is our first child, a girl, and was induced at 38 weeks due to low amniotic fluid. In hindsight, these factors alone should have been reason enough for her doctors to order an ultrasound at 6 weeks to identify whether there was any likelihood of developing hip dysplasia down the track. Had we known about her susceptibility and been able to treat her DDH at 6 weeks instead of 5 months, we are confident that she would have adjusted to the harness much more quickly, her total treatment time would have been greatly reduced and her motor skills would not now be several months behind her peers’. Should we decide to have any more children in future, we will be insisting upon screening at 6 weeks and much closer supervision as that child grows to ensure we identify any problems as early as possible. Although ours has been a very low intervention journey with straightforward treatment and, it would appear, a high level of success, we are certain that had it been diagnosed earlier, our little girl would be finished her treatment by now (or at least only required to wear her Pavlik part-time). Routine screening of children born with multiple risk factors for DDH would undoubtedly increase the number of early diagnoses and reduce the numbers of children and young adults who are required to undergo painful surgical treatment to rectify their DDH later in life.

Post-script:

Our 12 week ultrasound revealed that her left hip is normal but the right still has some way to go, so she will remain in the Pavlik harness for at least another 6 weeks. We are of course frustrated but still hopeful that the right hip can also be corrected with bracing alone.