And we’re brace free! Sort of…

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After a journey involving:

*two weeks in a Pavlik harness
*a scary but fortunately short-lived stint of femoral nerve palsy
*a month in a Rhino brace full-time
*three months in a Spica after a closed reduction (cut short by two weeks due to skin damage)
*a further three months of full-time Rhino bracing
*three months of nights-and -naps Rhino bracing
*plenty of visits to the hospital complete with ultrasounds and x-rays

my fifteen month-old Lucy has finally been given the thumbs up to stop bracing!

We took her for her check-up last week and the doctor is very happy with the improvement he can see in her left hip socket.  While the angle of the acetabulum is still a bit out of the normal range, it has curved nicely which means the femoral head will sit comfortably in the socket and not slip out. He feels confident that as she becomes more mobile on her feet the left socket will gradually catch up to the right socket and even out. He says there is little to no chance that she will need any further treatment when she is older but we will continue to have check-ups every few months to keep an eye on it.

We are absolutely delighted with this positive report but have decided to keep on bracing Lucy when she sleeps at least for a couple more months in the hope that it will prevent any regression from taking place. She isn’t at all bothered by the brace and sleeps through the night most nights.  Summer is on the way, though, so when it gets uncomfortably hot at night we’ll stop bracing her. We told the doctor our intentions and he said that was absolutely fine but from about eighteen months on the bracing will stop being effective so we shouldn’t bother to continue from that point.

Lucy is growing in confidence daily with her movement. She is standing and able to walk herself along if she’s got something to hold onto. It shouldn’t be long before she is able to walk unaided. Eighteen months is apparently the age by which babies should be walking so she’ so still within normal range and we have no cause for concern that the bracing has set her back.

Last summer we weren’t able to enjoy the beach and go swimming because she was braced and in a cast – we are certainly going to be making up for lost time this summer! Bring on the sand, sun cream and sandcastles!

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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.

 

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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20 Spica(and brace)-friendly Ideas for Keeping Babies Happy

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Lucy went into a spica when she was seven months old, which is around the time many babies start to crawl and get more mobile. I found it quite a challenge to keep her engaged and stimulated for three months and tried to find spica-friendly activities to do together. Some great ideas came from these sources:

* the various babycentre sites (.com, .au and .uk)

* www.thestay-at-home-momsurvivalguide.com

* www.babble.com

I’ve tried to keep the activities simple, cost-effective and do-able for non-creative types like me!  If you can get hold of/make a spica table, don’t hesitate. I think it is essential for keeping our bubs happy when they’re all plastered up.

I hope that you can find something here to try with your little one and would love to hear from you if you have activities to add to this list.

1. Visit a dog exercise area

1397618631559This is something Lucy and I do regularly because we have a dog – Stella – a Staffordshire Terrier (awesome family dogs if you’re thinking about getting one!) Lucy absolutely loves watching the dogs run around and play with each other and it keeps her entertained for ages. She doesn’t mind at all when they get boisterous and bump into the pram – it just adds to the fun!

 

 

2. Tear up a catalogue

Those annoying advertising spreads that clog up your postbox can become your New Best Friends when you realise their potential! I prop Lucy on the couch next to me and she rips up catalogues while I read the paper/have a cup of tea/check emails/whatever for a few minutes. The delight it gives her makes the tidy-up afterwards completely worthwhile.

 

3. Goodie box

1397615186394Gather a few items from around the house that you think may be of interest to your little one. Put them in a box and present it to them to open and explore the contents. I like to put a ribbon around the box for an added challenge. This can be done endlessly, as the most random thing can hold her attention more than any of her usual toys. This is one of my favourite activities!

 

 

4. Sign language

Now is as good a time as any to introduce your bub to sign language while they are forced to sit still and pay attention! Hop onto YouTube for little video clips to watch and then put the signs into practice during your daily routine. There’s a lovely Baby Einstein one that Lucy and I watch.

 

5. Go for a ride

1398057253824We have a little device called a Corn Popper which was given to us for when Lucy is older but she loves it when I pop her on the seat and hold her hands on the handlebars while whizzing her around the house or yard. The added bonus is that it provides an intense workout for your rear end and hamstrings 🙂 There are lots of different contraptions out there so it doesn’t have to be a Corn Popper that you use.

 

6. Rhyme Time

Our local libraries in Australia run a fabulous, free program for babies and toddlers called Rhyme Time. Unfortunately we’ve only made it to one so far due to nap times clashing with the sessions. I know rhymes are important for language development so we’ve come up with a Plan B: the libraries give out Rhyme Time dvd’s in a little goodie bag when the babies are a few weeks old. I pop it into the dvd player and we have our own private session of Rhyme Time, following along and enjoying singing and doing actions together. This way we get to do it when Lucy is fresh and cheerful and can stop it at any time when she’s had enough. When she’s a bit older we’ll get to the proper sessions but this is a good alternative for now.

 

7. Play dates at the park

1398058669395I’m sure you do this already as it’s a pretty obvious way of keeping mums and bubs socialised and happy. One thing I do to encourage social interaction for a spica-clad, immobile baby is to take along Lucy’s modified Bumbo for her to sit in. The other babies are inevitably drawn to this strange contraption and crawl over to investigate! Lucy has more interaction this way than if I am holding her.

 

 

8. Play with food

1397569580531Lucy is now starting to understand that things fit into different categories. I use lunch time to play around with this concept by chopping up finger foods and putting them into little tupperwares with different coloured lids. I sit her at her spica table and give her the tupperwares to explore, talking about what is in each one. We then open the lids and tip out the contents. Eventually she’ll be able to sort the foods back into the tupperwares but that’s a bit advanced for now. When I tidy up the scraps at the end of lunch, I put them back into their allocated containers and talk about what I’m doing. A lunch sitting can last nearly an hour – that’s how engaging she finds all this!

9. Play with scarves

1397615407203Colourful scarves lend themselves to all sorts of games for babies. The original idea was to tie them together and put them in a box for Lucy to pull out. It didn’t quite go to plan so I improvised and dressed up our dog instead 🙂 She was very accommodating – any attention is better than no attention!  Pull your scarves out the cupboard and see how your baby responds and go with the flow…

 

 

 

10. Wrap up toys

Unwrapping one of her 'presents'

Unwrapping one of her ‘presents’

Gather a few toys that haven’t been played with for a while and wrap them in gift paper. Put them in a bag and let your baby rummage through the bag and unwrap the ‘presents’.

 

 

 

 

 

 

11. Read books

My little book worm

My little book worm

One of our favourite regular outings is to the local library to take out books for Lucy. The library has a huge selection of books for babies and a lovely play area too. I started reading to Lucy very early on and at one stage I nearly gave up because all she wanted to do was grab the book out of my hands. Thankfully I persevered but now stick to just the board books which can sustain rough handling and I allow Lucy to turn the pages while I’m reading. She has become an avid little reader and I often walk into her room when she’s woken from a nap and find her lying there with an open book in her hands and one on her lap. As an English teacher, I couldn’t be more thrilled 🙂

 

12. iPad games

talking-tomI confess I’m a bit old-fashioned in terms of not wanting Lucy too device-savvy at a young age. I don’t let her play with my phone or iPad even though there are lots of apps that have been developed for babies. There is, however, one app that I have used with Lucy and she absolutely loves it: Talking Tom! I figure it’s good for aiding her speech development since the cat repeats everything she says.There is a free version available but I recommend buying the app so that you’re not inundated with annoying adverts. It’s a great one to have on your phone for when you’re sitting in a doctor’s waiting room and need to keep bub entertained.

 

13. Two-handed clacking

Future drummer?

Future drummer?

This is handy for when you need to keep your bub busy while you’re cooking. I move Lucy’s spica table into the kitchen and give her wooden spoons and spatulas etc to make some noise with.

 

 

 

 

 

 

14. Videos on on your phone

Like most parents I can’t resist taking lots of videos of Lucy being cute. I often play them back to her and she is absolutely captivated by them! When I get videos of my nephew doing cute things I show them to her too. Babies love watching babies!

 

15. Play with bubbles

There is a gorgeous video clip of a baby in hysterics watching her dog eat bubbles. If you haven’t seen it before, please pause and give it a watch – her giggles are contagious! I haven’t quite had that reaction yet from Lucy and our dog hasn’t quite eaten the bubbles that enthusiastically but I am going to persevere because, well, it’s fun.

 

16. Paint swatch sorter

Playing with paint swatches

Playing with paint swatches

Visit a paint shop and gather up a selection of free colour swatches. At home, get a yoghurt or icecream tub and cut a slot in the lid. Play with the swatches together with your baby, discussing the different colours, then show her how to put them into the container through the slot. It doesn’t matter if she chews or bends them because you can just get a fresh batch when they get tired.

 

 

17. Aeroplane

Lucy hates – I mean hates – tummy time but I know it’s especially good for her in the spica to help prevent pressure sores. One fun way of getting her onto her tummy is to do the old favourite aeroplane trick (lying on your back with your baby resting on your shins). She gets to see the world from a different angle and I sneak in tummy time without her even realising it.

 

18. Join a toy library

1400075732813This has been a lifesaver for us. After a few months of playing with the same old toys, Lucy was so bored of them but buying new ones can get very expensive. We have joined a toy library and pay $60 for a year’s membership. It is worth every cent for the amount of toys we now have at our disposal and I can experiment with different toys to see which ones she likes without having to buy them first and potentially waste a lot of money on things she has little interest in.

 

 

19. Visit the zoo or a farm – without driving anywhere!

A visit to the farm!

A visit to the farm!

A friend of ours kindly passed on a box full of toy animals when her girls grew too old for them. We’ve been having a lot of fun with them – some days we visit the farm and learn the names and noises of all the farm animals. On other days we visit the African plains where lions and zebra and giraffe roam (what noise does a giraffe make, anyone?!)

 

 

 

20. Make a collage

Lucy inspecting the items on our collage

Lucy inspecting the items on our collage

When you go for a walk, take a bag with you and collect little bits and pieces of interest as you go. When you get home, create a collage on paper or card and talk about all the things you saw on your walk.

 

 

 

 

 

 

I would love to expand this list so please let me know what else you’ve been doing to keep your babies happy!

First X-ray Post Spica

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I am pleased to report that Lucy and I had a very positive trip to the hospital this morning. It was supposed to be the day her spica came off but because that got taken off two weeks early we just had to have an x-ray done to check on the hip’s progress.

As much as I hated that awful spica, it seemed to achieve good things! The angle of Lucy’s left acetabulum went from being a very bad 38 degrees in January (6 months old) to measuring a much more stable 24 degrees today (10 months old). One of the mum’s in the DDH Parent Support Western Australia  group took a sneaky pic of the angles chart at Princess Margaret Hospital. According to this chart, 21 degrees (plus or minus 3) is the normal angle for babies her age. This means that both her hips are now in the normal range – woohoo!

angle info

Angle chart from Princess Margaret Hospital

A graphic version of the acetabular angles chart. The heavy back line indicates what is normal per age group

A graphic version of the acetabular angles chart. The heavy back line indicates what is normal per age group (this is not Lucy’s chart – it belongs to another hipster bub)

 

I know that it is possible for the hip socket to regress (as I’ve already seen with Lucy) and for this reason I am “happy” to keep Lucy in her Rhino brace for a few more weeks. The downer for me this morning was that I had been told by one of the specialists that she would be in the brace for 6 weeks full-time and 6 weeks nights and naps, but the specialist we saw this morning is a 3-month man: he prefers a minimum period of three months per treatment type.

He said that by the time babies reach the age of two, their bones are no longer plasticine or malleable enough for any form of bracing to be effective. From that point on, surgery is required to correct any problems. So, while it is still possible to mould Lucy’s hips, we’ll persevere with the Rhino brace and hope that it will do the trick.

Lucy is so much happier in the Rhino and her favourite time of the day (other than meal times) is when she gets to splash in the bath. Her legs are getting stronger by the hour, she is sitting beautifully, kicking madly, holding her toes at every opportunity and far less cranky when made to do tummy time. We are slowly giving her some brace-free play time which she absolutely loves!

Our hipster bub is making progress!

Trying out her new table that Dad made for her! Paint job still to be done

Trying out her new table that Dad made. Paint job still to be done!

 

Skin and the Spica

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In the words of one of the nurses at Princess Margaret Hospital: “Spica’s are notoriously hard to work with.” This was in response to the state of Lucy’s skin when her spica was removed last week – two weeks before it was scheduled to come off.

While we are doing everything we can to get Lucy’s hips better, Lucy’s body seems to be sabotaging our efforts. It refused to be shackled by the Pavlik Harness (read about that story here) and it reacted very badly to being in a cast for what should have been three months.

RASHY BUM

About a week and a half into the spica, Jon and I discovered that Lucy’s skin on her lower back/top of bottom was looking badly chafed. We weren’t sure how to treat it because we’d been told that no creams or powders were allowed. We decided the best thing would be to create a barrier between her skin and the cast so we placed a cloth nappy insert to line that area. Fortunately there was enough space to do so. I know a lot of casts fit too snugly for this method to work.

The skin was looking terrible and started peeling and then Lucy developed a temperature. On the second day of her temperature reading above 38 degrees celcius I decided to take her in to the hospital to be seen to in case she had developed an infection. Typically, it happened to be a Saturday which meant I could only take her to the Emergency wing rather than Orthopaedics.

The staff on duty weren’t too familiar with spicas and we were due to take Lucy for a 3-week check-up with her specialist in a few days’ time. After examining Lucy, they concluded that her temperature was unlikely to be linked to the condition of her skin and advised me to give her Panadol to keep her fever down. They also took a skin scraping to send to the lab to check for a fungal infection, and said I should discuss it further with the specialist on Wednesday.

Fortunately her fever came down on the third day and by the time we went for her check-up the skin was looking a lot better. (The cloth nappy insert proved to be a very effective addition to our nappy system and we used it for the duration of the spica, changing it at least twice a day. Lucy never had another skin problem in that area.) When I raised the issue with the specialist he wasn’t remotely concerned about it and said that he had seen some pretty ghastly skin conditions in his dealings with spicas but that it was worth it for the good achieved by the spica. He didn’t even take a look at her skin! The lab results showed that the skin didn’t have a fungal infection.  Interestingly, he said we should go ahead and use the usual Sudocrem or similar to treat any rashes (even though all the info I’ve read from various sources advises against doing so!)

WEEPING SKIN

I must say I was a bit taken aback by the callous manner of the specialist and the way he told me- basically – to suck it up and let the spica do its job. So when we encountered our next skin-woes we felt that we should try and manage it as best we could rather than take her back to the hospital. This time, after about a month of being in the cast, we noticed that Lucy’s skin on her upper thighs were starting to weep a bit. It was tricky to see exactly what was happening inside the cast but a yellowy-fluid was making its way out the cast and onto the edges of her nappy. We used a damp cloth to try clean the skin then dried the area before placing sanitary liners on the inside edges of the cast to soak up the fluid and create a barrier between the cast and the skin. We noticed an improvement after a few days of doing this.

Less than a week before she was due for her 6-week spica change, her skin took a turn for the worse and this time, not only was it weeping but it started to smell rotten. Again, it was on the weekend when this happened so I called the plaster room at the hospital to ask them what I should do. They said to wait until her cast change on Wednesday and the doctors would decide whether to put the new cast on or let the skin heal for a few days before fitting the new cast.

Cast change day was a long ordeal (more details here) and when Lucy came out of theatre she had on a new cast. I assumed that either her skin wasn’t too badly affected or they had doctored it in some way so that they could still put the new cast on.

The first two weeks of the new cast went by incident-free and fresh-smelling but week three brought a return of the weeping skin. Again we tried to manage it ourselves and this time used diluted dettol to clean the skin and prevent infection. We used bamboo nappy liners on the inside edges of the cast and changed them morning and night. The dettol seemed to work and when we went for Lucy’s three week check-up the staff at the plaster room had a look under the cast when I raised my concerns with them. Firstly they told me off for putting the liners inside the cast, then they said that all they could see was dead skin and that that was perfectly normal. When I explained the weeping skin to them they said they had never seen that before. I was told to bring her back in if it happened again.

ENOUGH IS ENOUGH

This is what was oozing out of Lucy's cast

This is what was oozing out of Lucy’s cast

 

Well, it did happen again. And with a vengeance. We tried our usual cleaning and disinfecting and drying and bamboo-lining but it got worse. One morning the smell had become so bad and the colour of the liquid oozing from her cast had turned a brown colour and I knew that the spica had to come off. I took her to the hospital and sat in the waiting room for over three hours before we finally made it into the plaster room. The staff took one look (and smell) of the liner I pulled out and they agreed with my verdict.

 

 

THE CAST COMES OFF EARLY

Lucy's thigh a day after the cast came off

Lucy’s thigh a day after the cast came off

The sight of Lucy’s skin under the cast was not a pretty one. Her left thigh was bright red and oozing and angry. One of the nurses asked me if no one had told us not to put anything down the cast, implying that we had caused this breakdown of skin. At the time I was trying to console my screaming baby and didn’t have the strength to defend myself against her accusation masked as concern. Later on at home when I had a chance to properly examine Lucy’s skin, I could see that the areas we’d been able to reach to clean and disinfect were a lot better off than the unreachable areas so I don’t think we did too badly in nursing her at home. Unfortunately you just can’t see what is happening under most of the cast so you’re pretty powerless to fix it all.

Bare-legged with dressings under the Rhino brace

Bare-legged with dressings under the Rhino brace

The hospital gave us some loose dressing to place on her skin under the Rhino brace and advised that the best thing for the skin was air, rather than something like Sudocrem which forms a barrier on the skin. For the first few days we didn’t put any leggings on Lucy so that as much air as possible could reach her skin and promote healing.

 

 

MY HYPOTHESIS

I’m not a doctor therefore not qualified to explain why Lucy’s skin reacted the way it did to being in the spica. I know that when she first went into the cast she had a fungal nappy rash. Perhaps this had something to do with it? With the second cast, the left side was a much tighter fit than the right side so less air was able to get in there and dry up the inevitable urine that sneaks in no matter how careful you are. I also suspect that on the day her spica was changed the doctors should have opted to leave it off for a few days to give it a chance to heal. It was late in the day and her procedure had almost been cancelled but the anaesthetist had pushed for them to go ahead with it. They probably just hoped for the best rather than delay her treatment.

THE ROAD AHEAD

One week after the spica came off, her skin is looking much better

One week after the spica came off, her skin is looking much better

I have been amazed by how quickly her skin has healed. It looked dreadful the first few days as the skin dried and peeled but after just a week it is almost completely better.

We are having an x-ray this week on the day that her spica was supposed to come off. In the meantime we have been told to keep her in the Rhino brace for two weeks on top of the six weeks full-time and six weeks nights only that was originally prescribed.

Spica Change Day

Standard

Yesterday was Lucy’s six-week cast change at the hospital. Anyone unfamiliar with spicas might assume this would involve an hour or two at the plaster room and not much in the way of trauma for child or parents. Well, what we went through yesterday was an eight-plus hour affair involving many, many, many tears from our little one. Fortunately this time I managed to hold myself together and could comfort her through it all. It was also a huge help to have Jon there for the day.

One of the biggest challenges for Lucy is that she had to fast before having the general anaesthetic. This was the basic outline of our day:

No solids after 07h00

No breast milk after 11h15

Admission 11h15

No water after 12h15

Procedure at 14h15

The day started off in good cheer, particularly since our new friends were there too for their daughter’s cast change. There is a lot of waiting around between admission and the actual procedure so it was lovely to be able to chat and compare notes and keep the babies distracted from their growing hunger.

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Lucy and Scarlett all dressed in their hospital gowns ready for theatre

To save time in the operating theatre, the doctors like the casts to be split in the plaster room beforehand. By this stage of the day, Lucy was getting pretty darn cranky due to her very empty tummy and no sleep. She didn’t find the ear phones, loud sawing noise and weird vibrations fun at all and expressed her displeasure very loudly and vehemently in the plaster room.

Trying to console Lucy while her cast is getting split with a saw

Trying to console Lucy while her cast is getting split with a saw

Once the cast was split, the plaster lady bandaged it up to hold it in place while we continued our wait for the procedure. We didn’t get a chance to see what her skin was looking like underneath. Jon reckons it’s probably better that way! A few days ago we were very concerned about the skin at the back of her thighs because it was getting raw and weepy and very smelly. We tried to clean the area using a damp cloth and tea tree oil, then blow dried it before placing sanitary liners under the cast to draw moisture away and form a barrier between the skin and the cast. We also applied some Sudocrem to the affected skin. It seems to do the trick and the skin was looking better by the time we got to the hospital. Apparently in some cases they delay putting on the new cast in order to let the skin heal. This was the last thing we wanted so we were very relieved they were able to proceed with the new one.

Lucy with her cast bandaged up, doing some quiet reading in the waiting room

Lucy with her cast bandaged up, doing some quiet reading in the waiting room

Unfortunately the theatre was running late because there was a patient undergoing an operation who also had shingles. To prevent it from infecting other patients, they had to keep the patient in the theatre until he/she had come round from the anaesthetic rather than take them to the recovery room as per usual. Then they had to do a thorough scrub down of the theatre to make sure it was infection-free. So instead of a 14h15 theatre slot, Lucy only went in at 15h30. Jon took her in for the gas anaesthetic which they use to put them to sleep before being taken into theatre and given the stronger anaesthetic administered via a cannula in their hand. When he put her down on the table she got very upset but the gas quickly worked its magic and she was asleep within about twenty seconds.

Grabbing a bite of lunch at the hospital's cafe. Love the hospital staff but the building is a pretty depressing place

Grabbing a bite of lunch at the hospital’s cafe. Love the hospital staff but the building itself is a pretty depressing place

An hour or so later, I was called to the recovery room to sit with Lucy while she came round from the anaesthetic. She was a very miserable baby at this point, crying inconsolably. I tried to breastfeed her to comfort her and get some food into her but she just kept on crying. The nurse gave her some Panadol via IV. Having a cast change can lead to some pain because the legs are accustomed to being in one position and the slightest change in this position can be sore. I also summoned my nappy bag to see if I could get some other food into her. She wolfed down a whole sachet of blueberry, apple and banana puree so she must have been famished. She eventually settled and her pulse calmed to a normal pace. She had, however, developed an intense dislike for anyone wearing a uniform and started crying angrily the moment any nurse came close to measure her temperature or check that her toes were warm and moving or even just to say hi! Any time I put her down on the bed she got worked up because I think she anticipated another unpleasant procedure. We had to wait an hour and a half in the recovery room because the surgeon hadn’t written an operation report and we weren’t allowed to leave until the report was available. The surgeon was busy with his next operation so only when he was done could we go.

After some Panadol and food, Lucy has finally calmed down but does not like nurses much!

After some Panadol and food, Lucy has finally calmed down but does not like nurses much!

But not go home. We then had to go to the next waiting room for observation and also to have the edges of Lucy’s cast taped to make them more waterproof and take care of any sharp bits. Lucy was beside herself at having to endure further treatment and wailed miserably the whole time the kind nurses were taping her up.

Getting the edges taped up - the last straw! (We went for purple legs this time)

Getting the edges taped up – the last straw! (We went for purple legs this time)

Eventually, at 19h15 we were discharged, exhausted and so happy to be able to get home and get our distressed child to bed.

The good news is that we are now half-way through our spica experience. May the next six weeks fly by…