Natalie (who lives in Chesterfield) shares her story in this guest blog post about hip dysplasia and slings. “My second daughter Lucy has Developmental Dysplasia of the Hip (DDH) and this is our story centred around continuing to sling a child with DDH.
Lucy was born by elective caesarean section in early December. Lucy’s hip dysplasia wasn’t picked up during her post-natal checks but the doctors referred her for an ultrasound of her hip due to presenting with a number of risk factors. I had mild hip dysplasia as a baby requiring double nappy treatment, she had been breech for some of the time, my bump was pretty small despite having a good sized baby and I had suffered from pelvic girdle pain for most of my pregnancy. After being discharged from hospital we received a letter saying that Lucy had been referred for an ultrasound of her hips. I wasn’t worried, after all the doctors hadn’t picked anything up on her post-natal checks, my eldest daughter Esme hadn’t any problems with her hips and besides my ‘clicky hips’ had been sorted out with just wearing an extra nappy. So we got on with the business of caring for a new born and family life. When Lucy was a week old I had a one to one consultation with Kate from Ways to Carry and Chesterfield Sling Library who helped me get our stretchy wrap (Karime) working for Lucy and I post caesarean. I mentioned the referral to orthopaedics for the ultrasound and Kate reassured me that it was safe to carry Lucy in the sling in the meantime as she would be in the hip healthy ‘M position’. We soon gained confidence using the sling and it enabled us to get on with family life.
At Lucy’s 6 week check, our GP noted a mild click on examination. However, I was still unconcerned, remember I had a mild click when I was a baby and I was ok! We had our orthopaedic appointment and ultrasound of the hip the following week. The appointment day arrived and I took Lucy on my own as my husband Rob had to work. I used the Karime sling rather than the pram as I thought it would be easier as I was still a bit sore following my caesarean.
It became clear that things were not as straightforward as I hoped during the ultrasound. The radiographer started looking more closely at the monitor and then called over the consultant orthopaedic surgeon. The rest of the appointment is a bit of a blur. I was told that Lucy’s left hip was extremely unstable and that she would need to wear a pavlik harness for the next 12 weeks, 23 hours a day. I was devastated. I stood in the reception trying to make a follow up appointment with tears streaming down my face. Lucy was howling due to the unfamiliar pavlik harness that had just been fitted. I had my sling knotted around my body but I was too scared to put her in it in case I hurt her.
A kind sister noticed this wretched scene and rescued us. She made an appointment for us and helped soothe both me and Lucy! She gave me an information booklet about pavlik harnesses and some information about the charity Steps who support families affected by lower limb disorders. I asked her about using the sling and explained that Lucy would be in the optimal ‘M position’. She encouraged me to show her Lucy’s position in the sling and said it would be fine to carry her in the harness in this way as it wouldn’t affect the hips. Later that day I contacted Kate who encouraged me to attend the sling library session. There I met with Mel a peer supporter who had a child that had been successfully treated for DDH. Between them they gave me the confidence to continue slinging my little daughter which made the situation easier to bear.
Lucy had been in the harness for a month when we were told that it wasn’t working and that she would need to have a closed reduction. Lucy would have her joint manipulated into position and set using a plaster cast for at least 12 weeks. This was devastating news as the pavlik harness has very good rates of success. The closed reduction was to take place when Lucy was 11 weeks old. In the weeks we had to wait for the closed reduction I started doing my research. How were we going to cope and care for this baby? Amongst the obvious questions of what the procedure entailed, how to change a nappy and what was I going to dress her in was will I be able to carry on slinging? I asked the staff at the hospital about using a sling or an ergonomic carrier but they were not able to answer my questions. I spoke to Rosie at the Sheffield Sling Surgery and was reassured by her knowledge as both a baby wearing consultant and as a GP. Rosie was able to answer my questions and allay my fears. I was determined to keep carrying my baby but there wasn’t the information out there. I saw very few pictures on line of carrying a baby in a spica cast and even fewer examples that looked comfortable or safe. But talking things through with Rosie and Kate I was reassured that it was possible to do so. What was more, they both had experience in supporting other hippy families in their baby wearing journey.
On the day of the procedure, I carried Lucy to theatre in the Karime. It gave me comfort to keep her close as possible. I stayed with her whilst she was anesthetised (put to sleep), taking a last look at her dear little legs before kissing her goodbye. The procedure took less than 2 hours and Rob and I were called to theatre recovery to see a very cross little girl. I was desperate to pick her up but was scared to hurt her. I was still wearing the sling but it was redundant now, my tiny baby was too heavy in the bulky spica cast to go into a stretchy wrap. I pulled the blanket back to see what had been done. The cast was very broad, legs in a permanent frog position and extremely pink. Bubble-gum pink in fact. There was a letterbox shaped hole cut out round the nappy area so we could change her.
After a CT scan to make sure everything was in the right place we went to the ward so Lucy could recover from her general anaesthetic and so her equipment could be assessed. The occupational therapist (OT) and physiotherapist assessed Lucy’s car seat and pram. She was now set too wide to use her car seat. We were given an exemption note in order to get home without a car seat until we could get something that would work for us. Lucy couldn’t fit into the pram either but could just fit into the pushchair part somewhat precariously at the bottom of the seat. I didn’t like this one bit. I couldn’t see my precious girl and it didn’t seem comfortable although Lucy didn’t seem to mind too much. We were discharged home later that day. Cast life had begun.
Kate visited a day or two later armed with a tape measure and a bag stuffed full of slings and carriers. She measured the distance between Lucy’s knees and worked out which carrier could be used to carry Lucy safely. It didn’t take long to see that the Beco Gemini would be suitable. I had planned on graduating to a buckle carrier once Lucy was older and I felt confident once Kate had shown me what to do.
I used the Beco Gemini for a few weeks, initially quite happily but then I started getting fussy. I missed the closeness of the Karime, Lucy seemed to list to one side as her bottom half was so much bigger than her chest, she was getting hot due to the cast and the padding on the carrier and I was aching although that was probably due to my baby being roughly 1.5KG heavier overnight! Kate to the rescue once again. I tentatively asked if wrapping would work and would it be difficult? Kate took the time to show me what to do and I left the library armed with a colourful Hoppediz size 6 wrap and the ability to do a front cross carry (FWCC). With a bit of practice I fell in love with wrapping. Lucy was not overheating, we were both comfortable, I could mould the wrap to Lucy’s shape and best of all she felt closer to me. Wrapping gave us the closeness that sometimes the cast can rob you of. There is a physical barrier between you and your child and that is pretty hard to bear some days.
When Lucy had her cast changed six weeks later I carried her down to theatre using a FWCC. I had gained confidence wrapping and felt able to carry Lucy in the wrap as soon at the plaster cast was dry enough to do so. This cast was quite different to the first. It was narrower and the legs were set wider. She was also asymmetrical with one knee further forward than the other. This provided a fresh set of challenges. With a good deal of tea and cake Kate helped me to find a way to continue to carry using the FWCC technique, this time using a large Ali Dover wrap. We also tried the Scootababy. A lot of “hippy” parents like the Scootababy but I just couldn’t get on with it. I liked the ease of use and Lucy felt secure but I couldn’t use it for long without feeling discomfort. The next trip to the sling library saw the Scootababy being returned. However I did learn a few hip carries using a short wrap thanks to Lindsay and her patience. I can’t tell you how proud I was when I managed to master a Poppins carry, feed Lucy and vacuum the house too. Hip carries are not easy for me as Lucy’s cast digs into my hip and I am still recovering from the pelvic girdle pain I suffered with in pregnancy but they are useful to have in my arsenal.
We have another three weeks before the next cast change, this time we anticipate that it will be a broomstick cast. This means there will be a supporting bar spreading the legs in the cast. Of course this will bring a new set of challenges but with tea, cake and the amazing support that we’ve received from the sling community we will overcome them.
With thanks to Kate, Lindsay and the team at Chesterfield Sling Library. We couldn’t have done it without you.”
Summer 2016 Update
DDH UPDATE
Lucy had her spica cast changed a week earlier than scheduled due to attempting to outgrow it. This time a broomstick cast was going to be applied. Instead of the plaster coming up beyond Lucy’s waist, it was going to look more like plaster trouser legs with a supporting bar across the middle. Beyond this description, we were unsure of what to expect. As part of our preoperative preparations I booked a follow up session with Kate from ways to carry scheduled for the day after the cast change.
The day of the procedure came round and we once more made the trip to the hospital. I had borrowed a beautiful Girasol Northern Lights wrap from Chesterfield Sling Library and once more the use of a sling made our visit much easier. At the hospital where Lucy is treated, there is no car parking on site and the hospital is situated on a busy main road. Also the hospital itself is Victorian with several extensions and additions to the original building. This means that there is a quirky layout with strange corridors and many stairs and lifts to navigate. As I didn’t take our pram it was easy for my husband Rob to drop Lucy and I off near the main entrance to the hospital before parking up. It is always a stressful day when Lucy goes to theatre so anything that minimises the worry of parking and corridor navigation is welcome!
Lucy was third on the morning list this time so we had a longer wait than previous visits. Thankfully the use of the sling helped keep her calm during her wait. She even managed a little snooze snuggled in the sling before she was called to go to theatre. Walking down to theatre with Lucy nestled close to me is always bittersweet. Any parent will tell you how hard it is taking a child to theatre and keeping strong for them. The sling helped me provide a safe cocoon for my little daughter and was a comfort for me too.
After what felt like forever but was actually less than 90 minutes, we were called to theatre recovery to our furious baby girl. The nurses in recovery were treated to her ear-splitting cries of protest. I picked Lucy up and immediately wondered how on earth I was going to continue our sling journey and how I was going to care for Lucy in this cast. Lucy’s legs were set in a very narrow position slightly bent at the knee. The supporting bar went across the calves. This time there was no way I felt confident enough to attempt to wrap Lucy without a consultation with Kate and when we were discharged home later that day Rob carried Lucy in his arms back to the car.
When we returned home I took pictures of the new cast and emailed them to Kate so she knew what the cast looked like ahead of our consultation. I was really sceptical about continuing to sling. I just couldn’t see it happening with this cast. When Kate came the next day, it looked like the pram was going to finally get some use! We tried many carriers and some very inventive wrapping techniques, but nothing seemed to work. A lot of tea and shortbread was consumed that day.
I felt like I’d lost something important. Rationally I knew that this cast was planned to stay on for 6 weeks, that I’d be able to carry in the future and that treatment was needed to get Lucy her healthy hips. But emotionally I was fed up. I wanted to rail against this. It wasn’t fair and I didn’t want to lose out on something that had helped us bond.
It would have been easy for Kate to say “Leave it for now” but she didn’t. She went above and beyond the call of duty and continued trying to find a carrying solution for Lucy. Using the pictures of Lucy’s cast and some measurements we had taken, Kate set to work. She used her contacts on a national baby wearing consultants forum who made suggestions that could help us. She made a cast for one of the demo dolls using card and a wooden spoon so she could try some of the ideas out ahead of seeing me again. The difficulty was that the gusset area was a mere 4.5 cm wide, the legs were again set asymmetrically and the bar added further complications.
Kate came to see us again a day or so later and again a lot of tea and shortbread was consumed. However, we came out of the session with not one but two solutions! Kate suggested we try wrapping in a modified FWCC. Due to the shape of the cast I needed to put a pad in between Lucy and I in order to get a supportive position. The passes of the wrap had to through the space above the bar and make a seat area. It wasn’t perfect but it was safe and supportive. The second solution was using a connecta carrier with a manduca strap cinching the seat area in. Usually one would put the connecta on before putting the baby into the carrier. However, this wasn’t possible as the carrier needed to be fed through the bar attached to the cast first! I would then have to lie Lucy on my chest and then fasten the clips around my waist before securing the shoulder straps in the usual way. This might sound impossible but I soon figured out how to do this alone. I’d lay Lucy on the connecta in the boot of my car, lean over her and with the waist straps set at their longest point I’d clip it round me. I could then pick up Lucy and the carrier, and adjust the waist strap to the correct length before proceeding to clip in the arm straps as normal. They do say that necessity is the mother of invention after all……
It wasn’t possible to carry Lucy in a sling for long periods. Due to being cast asymmetrically she would start to list after a while and there was a fresh set of challenges to overcome. It was not really possible to sit with her in the sling due to her legs being in the way and going up stairs could be challenging. This being said, with practice I got better at managing these complications. It was still an important lifeline for us. For example going to the supermarket was extremely difficult without a sling. Lucy could not use a normal baby seat on a trolley and the adaptive trolley for children with special needs was just too big for her.
A tough six weeks later we once again made the trip to the hospital to have the cast removed. As Lucy didn’t need a new cast she did not have to go to theatre or have a general anaesthetic and the cast was removed in outpatients. Lucy was very calm and coped brilliantly with the noisy business of cutting her out of her cast. I cannot tell you how good it was seeing my little daughter’s legs again after four and a half months or how precious that first cuddle was. Despite slinging Lucy her whole life, I realised I did not have any practical experience carrying a baby without a cast or a harness so decided to use the pram on the big day. I still carried Lucy back to the car in my arms as I couldn’t bear to let her go!
A couple of days later, I attended Chesterfield sling library and was soon back slinging again. Kate advised we try a wrap mei tai for the first couple of days to minimise any fuss whilst Lucy was adjusting to having her legs freed from the cast but a week down the line and we are wrapping again with the beautiful rainbow wrap I treated us to in celebration of our journey.
I have been an extremely fortunate woman to have such excellent support from Kate and the wider sling community.
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