My heart broke last week when my friend Olivia delivered the news that her beautiful daughters hips were abnormal. They had been referred for more tests. Most of you are aware that, at 7 days old, my daughter River was diagnosed with Hip Dysplasia. Her treatment plan was to be strapped into a harness for 24 hours a day for an undetermined amount of time. In our case it ended up being 14 weeks.
When talking to Olivia I was careful with my words. I honestly thought they would just monitor her new bub. The odds were on her side, we couldn’t both have little girls going through their early weeks and months in these contraptions could we?
Unfortunately yes we could. Tilly would be fit into the Pavlik Harness at 7 weeks old. In the days between the doctors text (yes I thought a text with this news was strange too?), to the application of the harness, this new mother naturally had so many questions, and I was more than happy to answer them.
When our family was in this situation we felt extremely alone. At the initial consultation our doctor advised us not to google anything because “there are a lot of horror stories out there.” So we took her advice, however this did leave us in the dark especially in regards to information about the practicalities of day to day life with this condition. Of course I didn’t want anyone else to feel isolated like this. While Olivia and I messaged each other back and forth covering a whole array of subjects over many days, I couldn’t help thinking that others could benefit from knowing the answers to these strange questions if they were in this position.
So here goes. And please do get in touch if you, or someone you know, is going through this and would like to talk. Its not nice to feel alone and disconnected.
What is Developmental Dysplasia of the Hip (DDH)?
In layman’s terms, it is where the hip joint is not formed correctly. In Rivers case the ball was so loose on the left hip that the Doctor could easily dislocate her hip out of the socket.
Who gets DDH & Why?
Research has shown that DDH is predominant but not exclusive to girls who have
- family history ( in our case) or
- babies born, or that spent time in utero, in the breech position
This is the treatment that was decided upon for River. It is a harness that held her in the right position to correct her hips while she grew. It was on for 24 hours a day 7 days a week.
No more baths. This point was pretty emotional for me. I adore bathing my babies. Who doesn’t love a squeaky clean nude bubba, and those precious moments of skin to skin with your baby?!
Some diagnosis and harnesses allow them to be removed for a certain period of time to bath, move the muscles etc. But not in cases as severe as ours.
Bathing & Tui Baby Balm
I established a loving sponge bathing routine with River which helped us to bond even when the going was tough. As she was only 10 days old when the harness was fit, she was still a sleepy newborn. I would wash her half in the morning and half in the evening, otherwise trying to do too much would result in her getting scratchy. You need to be very particular about drying in the crevices which can take time. I applied Tui Baby Balm (recommended by my amazing Midwife) to the skin folds around her hips and the back of the legs to keep infection at bay.
Cue more tears. My beautiful baby girl couldn’t wear any of the clothes we had for her. It might seem petty, but it was these little constant reminders of her condition that made it harder for me. I found the best thing to do was to clear out all her drawers of things she could not wear and box them up labelled “when River is out of harness”. Out of sight out of mind. With some harnesses you can wear clothes underneath but not us, so here is what worked.
- Loose dresses
- Nappy covers with snaps at the sides
- Sleep sacks
- Some harem style pants
- Old fashioned booties or loose socks
All other clothes I purchased from a NZ company moonubaby, who specialize in modified clothing for harness-wearing babies.
The key is to have nothing tight on the straps of the harness or you run the risk of counteracting the work it is doing. So no onesies/AIO, pants, rompers etc. for us.
I found we went up a size to 3-6 months to get the clothes over the harness even when she was only 2 weeks old. Once I got into the swing of things I managed to find things I liked. I was over the moon to get custom made headbands that matched nappy covers made by NZ company rosyposyhandmade. This made such a difference to my state of mind being proud of what she was wearing.
We live in a small town and I wish I had found the NZ online Facebook community “harness heroes” earlier. They are warm, friendly and information sharing people who were so kind. I joined other groups but I often found them less comforting for various reasons.
I also crossed hospital paths with another local Mum who was going through the same journey with her daughter at the same time as us. We ended up having coffee dates and comparing notes. I can’t recommend this enough. Talk to those that are going through what you are. It helped my head as well as my heart.
Getting around – car seats/prams/carriers
We used our capsule but padded it out with cloth nappies and towels. We were able to use our pram with bassinet attachment for a couple of weeks until she grew too wide for it. I thought we were only going to be in the harness for 6 weeks so we made the decision not to buy another one. If I knew how long she would end up spending in the harness (3.5 months) I would have looked into buying a new pram or hiring or modifying one.
With an energetic 18 month old I was stoked to learn that I could still use my Ergo carrier. You can read about hip friendly carrying positions here.
We used disposable nappies and found that because of the positioning we went up a size straight away. Those infant ones just didn’t cut it! I didn’t actually find changing nappies tough after a day or so. We were very careful to lift from the bottom (not legs) and still do this now.
I never swaddled Hunter and it was something I always said I would change with baby #2 but incorrect swaddling is known to contribute to DDH so I was taking no risks. I safely co-slept with River. It wasn’t a conscious decision, we did try other options but between DDH, an active toddler and a business to run we went with the stress-free option.
This also meant she had tummy time on my chest as I wasn’t keen to do tummy time any other way. You can see the research here
Does the harness hurt?
I was expecting River to be in pain from the minute the harness went on and I dreaded our 2 + hour drive back from Invercargill but she slept the whole way! Sure there was some discomfort but I never felt like she was in pain.
By day ten (when the harness went on) we were pros at feeding (not the case with my first son Hunter but that is another story) and we both adapted easily to feeding in the harness. It was only as she grew that I found positioning harder and more awkward. I used a cushion in the last few weeks to make it more comfortable for both of us.
What made me feel better?
There were a lot of dark times but luckily I had a blonde haired blue eyed boy that needed mum to be strong and to get out of the house, so reluctantly that is what I tried to do most days. Even though I knew leaving the safety of home I would have to deal with stares and tactless comments. Those comments could take you surprise ” Eeww what has happened to her legs!” shrieked by shop assistants and “hahaha she looks so funny, I wish I could do the splits like that” by certain medical staff I was required to see regularly. Why couldn’t they look at her gorgeous eyes, her button nose, her smooth olive skin and her beautiful handmade dress? But there were some people who would ask to hold her (my eyes are prickling just remembering this kindness). Yes it was awkward but when people would give it a go they realised it wasn’t really that hard. This helped lift the heaviness I often felt.
I loved it when people gave River clothing that worked on her and I remember specific times feeling overwhelmed with such kind gestures.
If you have friends going through this the key things I would suggest are:
- Acknowledge what is happening and ask questions. How was the last doctor’s appointment? What is the prognosis? How has today been for you both?
- Try and discuss something other than the DDH? Does she smile yet? How is her sleep? Does she interact with her siblings?
- Go and visit them at home. And take chocolate because what mumma doesn’t feel like chocolate? At home because when you have to really pump yourself up just to leave the house it can be hard to meet in busy cafes/playgroups etc. Home is where it can feel safe.
It was incredibly hard not to wish away the days and weeks while River was strapped up. I know from experience with Hunter how precious this time is but it was tainted by this dreaded harness and the impact it had on everyday life. When we were given the news by our kind and gentle specialist that we could remove the harness it was incredible. We carefully undid the Velcro and looked at her stomach, her legs, her back. We lovingly ran our hands over these areas of her wee body that have been hidden away. She responded to our touch and we couldn’t wait to get home to get to know what strangely felt like almost a new baby again. All gangly legs and floppy.
River and I were outside when Hamish came home with Hunter after daycare. He pointed at her and with his very limited vocabulary said “No shoes”. Hamish & I looked at each other through wet eyes and without saying a word knew that we will never forget those beautiful words.