We are really grateful to Ruth for sharing her DDH story as this week’s guest post. As a fellow twin mum I can only imagine the added emotional and logistical stress of having a baby with DDH on top of being a new mum of twins – a truly inspiring story.
Our daughter, a twin, was diagnosed with ddh at 14 weeks and is currently in the final month of her spica cast at 6 months old.
With a paternal grandmother having had over 10 hip operations, hips were high on the list of new born checks for our twin girls. I can honestly not remember the outcome of the somewhat brutal hip exam by the paediatricians, wanting only to try to console my babies, but with the family history, and both babies being breech, we were booked in for a hip ultrasound at 6 weeks. Hettie was given the all clear but Abbie was recalled, with the semi reassurance that she was still small so her borderline measurements would hopefully be fine next time. However after the next ultrasound we were referred us to paediatric orthopaedics.
As a scientist and new mum I wanted to be as prepared for the consultation as possible, reading up on hip angles and possible treatment pathways, and as a reassurance to family and friends showing concern about hospital appointments. In a busy childrens’ hospital with little room for our twin pram, our appointment ended hurriedly with “her right hip is dislocated and she’ll have to have a procedure under general anaesthetic and she’ll be in a hip cast for 3 months” and away we were sent. I begged for some question time, but was not able to go through all my queries at that time.
And so our countdown to the operation date began and I tried to be as prepared as possible; thinking through the practicalities of pushchairs, car seats, clothing, breastfeeding. I was helped immensely by Natalie Trice’s book Cast Life, and facebook groups, reading how other families adjusted to life with a baby in a spica cast. Just hearing others’ stories made the whole situation a bit less daunting, but there were fewer stories with young babies (who’d usually be in a pavlik harness), and none with twins so I did also worry about tandem feeding, twin pushchairs and sleeping arrangements, as well as exaggerated physical development delays having another baby the same age, and meeting the need of a frustrated/uncomfortable baby as well as her twin sister.
Perhaps unusually I was not upset or frightened by the diagnosis, being very practical about the treatment, and grateful that this had been picked up at a young age. What did upset and worry me was how our routine might be affected. I was very proud of the fact that we were managing with twins. I was successfully breastfeeding, sleep was ok, babies were happy, calm and settled. We could get out and about, and I was getting used to going out more on my own. We are very fortunate to have family nearby so this independence had been greatly helped by their input but my real fear was that I’d lose this, along with our happy baby.
Worries about the procedure were overshadowed by a ‘fight’ to get Hettie to stay with me on the ward overnight, and again on the day, wanting to be around for Hettie removed the emotional side of what was happening. Little Abbie coped fine being nil by mouth on the day and was almost asleep anyway by the time we went to the anaesthetic room. I didn’t feel at all emotional, and actually felt guilty that I had no need for the tissue handed to me by the nurse as I left Abbie in their care for the closed reduction.
By far the worst part of our ‘spica journey’ for me was the first recovery period as our little baby who rarely made a fuss was clearly very distressed. It was hard to tell if her cries were fear, frustration, pain, or hunger and to some extent this ambiguity over cries has remained. However after the first few hours she had started to adjust and it was her sister who was more unsettled overnight in the hospital!
As promised by the other families, we did all adjust: The twins stayed in their shared cotbed, but with a divider for safety. Abbie just fitted in the pram, and later in the pushchair. We found comfortable positions to feed in. We could confidently and comfortably hold her, and let others hold her too. Her (and hence my own!) sleep was not really affected. She did not fit in the adapted car seat with the first cast, but fortunately we are able to walk where needed. I was able to vary her position throughout the day from her beanbag, to play mat, to cot, and she has entertained herself well just studying her hands, banging on her cast and kicking her legs so her socks fall off!
I was a little nervous at first about ‘showing’ our now perhaps ‘not perfect’ little baby in a big cast but my husband is a ‘just get on with it’ sort so there was little time to be precious! We did experience the inevitable hygiene difficulties of a baby in a body cast, and after noticing sore skin, had several trips to the plaster room for them to clean her up as much as possible. Abbie made no complaint about being sore but I’m glad I noticed! For her second cast she was given a fully bathable one which has made keeping clean much easier.
While not wanting to wish away 3 months of her first year, these past weeks have at some times seemed like a count down to cast off day. First with the cast change, then now with only a matter of weeks left. However, life has continued as normal. I’ve just started introducing solids (having been creative in making a seat for her!). Abbie has bottom teeth, ahead of her sister, and can almost ‘high-5’. Hettie loves to stand and can roll over. Abbie is desperately trying to sit up in her cast which is both funny and heartbreaking to observe, but reassuring that once ‘free’ the physical development will continue well. We’ve continued to attend church and toddler groups, visit family nearby, pop into town, and go to coffee shops as we were used to.
Cast off day is 3 weeks away, and so far all is looking good. We will know on the day if she is to have a brace for an interim period, or what the future outlook for her hip might be. We hope our journey ends here but know for many that the road is long so remain mindful of this.
A huge thank you to Ruth for sharing her story – best of luck to little Abbie {and Hettie too!} for the future and we look forward to hearing an update!
Do you have a DDH story to share? If so contact me here to discuss submitting a guest post 🙂
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