Hip Dysplasia and the Pavlik Harness: Information and Help

From the moment Eleanor was placed in her Pavlik harness to correct her hip dysplasia my world turned upside down.

Those neat, lovely piles of pre-washes clothes I so carefully folded? Tucked away in hopes she'll still fit in something when she is out of her harness. I can't bear to see them everyday so they are better out of sight and out of mind.

The cosy, lovely infant car seat / bassinet / travel system we picked out? She no longer fits in either piece and screams bloody murder when wedged in.

Our lovely, easy, calm, connected breastfeeding experience? Completely broken with weight-gain struggles and positioning problems at every turn.

The baby massage and swimming classes we signed up for? All cancelled or delayed until she can actually participate.

While things are not what I expected them to look like when I was baby-dreaming whilst pregnant (when are they ever?), they are what they are. I have scoured the internet for help and information and tips, but none of the websites I found had all of the useful information I needed. I found a support group online that was brilliant and helped me through my questions and concerns or just when I needed some reassurance. I thought it might be useful to put everything I had found and learned into one place for mums in the future.

Clothing:

Most of the clothes I had so carefully bought (or received as presents) did not fit over Eleanor's harness. Instead we found the following very useful:

Stretchy dresses, or empire waist dresses, sometimes one size up (sometimes her size), generally fit. They have to flare out enough to not put pressure on the harness. Underneath the dresses she wore onesies, her size but with a onesie extender added on.

 

Big dresses!

Onesie extenders (also known as vest extenders) worked wonders

We bought or were given clothes from two companies:

Silver Lining based in Australia - not cheap, but gorgeous, lovely clothes - especially the trousers that saw a lot of use as the weather got cooler!

Hip-pose - based in the UK and affordable we bought several jammies and onesies that we loved. It was so wonderful to see Eleanor so comfortable, especially at night!

There are many other websites out there but I found them either too expensive or their variety lacking. I also went to a second hand clothes sale and scoured the stalls looking specifically for clothes that were cheap and would fit. I was surprised by how many adorable and useful dresses I found!

 

Bodysuits from Hip-pose

 

The onesie and harem pants that fit over the harness from Silver Lining

Car Seat/Transport

We had originally purchased and IziGo BeSafe infant carseat, but within weeks realized we needed something different. There are two options in the UK for seats, but only one I found affordable. 

MaxiCosi has a terrific program where they rent you a hip-friendly carseat for up to 6 months for 100 quid, 50 of which is returnable when you give back the seat - and it's FREE if you already own a MaxiCosi seat! It is the MaxiCosi Opal HD seat, and we are so grateful Eleanor no longer screams when she is sat in the seat - she can spread out and is so much more comfortable! As of September 2016, this was the number to call to get the form to fill out: 012 8441 314. You also need a note from your doctor to prove your baby has hip dysplasia (my ortho consult wrote one up in a day!). Start to finish it took 6 days to get the seat - really terrific service in my book. 

Elenaor in her MaxiCosi Opal HD seat - so much more room!

Eleanor still doesn't fit in the bassinet and is too small for the normal seat, so instead, I'm baby wearing! We have an ErgoBaby 360 and a ring sling, and she spends a lot of time attached to me. Both are hip friendly and if she's happy I'm happy.

 

Breastfeeding:

This is one that I really struggled with, as after she was placed in the harness she didn't gain weight for two weeks. That made me one stressed out mama! With the help of women on my support site, I learned several new positions and ignored some of the usual breastfeeding advice.

The four positions that worked best for us are:

1) Sitting upright, baby straddling my knee

2) Sitting upright, baby held diagonally across my body one arm supporting the head, the other between the legs

3) Mum reclined, baby diagonal or laying tummy to tummy  (also called biological breastfeeding)

4) Baby on her back and turning her head, mum on her side (used at night!)

It was a tough slog to get back to where she didn't scream at me every time she ate - I was uncomfortable, she was uncomfortable, and we both missed the lovely, easy days where she'd eat for half an hour then fall asleep nursing. Since the harness, she never does that and I miss it but I'm grateful she's at least eating well now. 

Other Tips:

We found that it was easies to flip Ellie over each time we did a diaper change to thread the tabs through the harness. This led to LOTS of tummy time, which means our little one is already a pro!

 

Every night Eleanor got a washcloth bath and a nappy rash cream (we used Bepanthen as recommended by our ortho) between the hips and under the knees to protect the delicate skin. 

Some people recommend socks on the shoulder straps to protect baby's skin. We had the harness on 24/7 so nothing could go under it. This meant her clothes always protected her from the straps.

Our ortho was lovely and attached soft, fleecy wraps around the harsh straps over Eleanor's knees and backs of her legs. This prevented any type of rubbing rash.

Fleece on the straps!

The first 2 days (and for us, 2 weeks!) are the WORST and then it really does get better. Ellie still has panicked moments where she tries to kick her legs and can't, but is coping brilliantly for the most part!

Life and everything else:

Part of watching your baby undergo treatment for anything is just to put on a brave face. I had to cancel classes, mourn the loss of her little adorable chubby legs and tiny toes for weeks on end, and do without sweet bath time and fluffy baby hair. It's not the end of the world, and it could be worse, but none of those thoughts ever helped me. Instead, I dressed her in big dresses, took pictures of her sweet face and just got on with it. We couldn't change our situation and we just have to reach the end of treatment. For us, the four week ultrasound checkup was such a highlight, as we were told her left hip is completely acceptable angles, and the right hip (which was fully dislocated at the start) is improving. In two more weeks we have another check and we are hoping with everything we have to be harness free. I miss the soft cuddles and kicking legs of my newborn, and I am desperate to get them back. Until then, I hope these thoughts help a few other mamas out there struggling with their sweet babies in their harnesses

DDH and the Pavlik Harness

Before leaving the hospital, Eleanor was given a complete look over to be sure she was healthy. The doctor examining her said that she thought she felt a bit of a click in one of her hips and was recommending her for a second consultation by orthopaedics. In my haze of happiness (and perhaps a drug stupor left over from the c-section?) I didn't think much of it. The doctor wasn't making much of a big deal of it, and she said it was really just a precaution.  

We returned home with our little princess and were instantly in love. I didn't think beyond the next cuddle, feeding session, or diaper change. The days flew by and we received our letter for our appointment. It was the day we were leaving for Ellie's first holiday to Wales, but again, I didn't give it much thought. Against my normal nature of researching everything, I hadn't even remotely looked at possible outcomes. After all, the doctor had said it was just a precaution.

Eleanor before the appointment looking grumpy

Our appointment day arrived and we were trying to cram everything in - passport photos, mailing out her passport application, packing, haircuts, etc. We arrived just in time for our appointment and she had an ultrasound on both hips. She fussed a bit at first but then settled in and let them work. Two separate doctors looked at the ultrasound screen, chatting and making notes. I was so used to either seeing a baby (my Ellie!) or my ovaries on the screen that I couldn't follow what they were doing as squiggly lines and blobs appeared on the screen. I spoke softly with Ellie and rubbed her head, soothing her. When they finished, they faced Paul and I and told us that Eleanor's hip sockets were too shallow. This is a condition known as hip dysplasia (or developmental dysplasia of the hips, abbreviated as DDH) and only one baby out of a thousand has the condition and needs treatment. Unfortunately, Eleanor was one of these babies. Although they stress that this is nobody's fault, hip dysplasia usually results from a baby who is big, long and who was not able to move her legs enough in the womb to develop the hip socket. Other risk factors include having a history of DDH in the family and being a firstborn girl. Even with my gigantic bump, Eleanor was too confined to develop. The guilt began to settle in.

A bit in shock, we waited for our consultation with the physical therapist. I stupidly googled the condition and treatment. What followed was a flood of tears, not quite kept at bay. Although "easily" treated by a harness 98% of the time, the harness itself is not pleasant. It locks baby's legs into a wide froggy position and prevents them from straightening their legs at all to promote good hip position and to dig out the hip socket while it is still cartilage. We were called in and Eleanor was fitted with the harness. We were told that she was not to have it removed at all and that swimming and baths were out of the question for the duration of the 12 week treatment. I couldn't help it, I was absolutely in pieces. Our perfect little girl who loved to kick her legs and cycle and push and practice standing could no longer do so. The therapist was explaining how to change a diaper under the harness, how to give her a sponge bath by removing one strap at a time, what to do with the inevitable poo-splosion or throwing up episode. I tried to listen as I mourned the loss of my baby's soft, uninterrupted skin and tiny toes that were tucked away in the harness. Paul thankfully stayed sane and on top of things, asking questions and taking in the information liked rational parent. Eleanor, denied naps for the entire morning, was inconsolable. I tried to nurse her, but none of our usual positions worked. I was given small pamphlets explaining how I must be feeling (guilty, frustrated, angry - tick, tick, tick) and how to handle the harness for the next few months. We were told to call if we had any questions and bundled her into her car seat and headed home to finish packing before starting our trip.

Squashed in the carseat

The next two days and nights were torture, holding our sweet girl as she screamed a high, terrible, panicked scream every time she realized she wasn't able to move her legs. Our little Wriggles, completely confined, and it was heartbreaking.  We had never met this loud, frustrated, unhappy baby and we had no way to help her as she strained against the harness. I kept holding her and snuggling her, sobbing as I repeated, 'I'm sorry, I'm so sorry" over and over again. We had been told she'd need 24-48 hours to adjust and that moment couldn't come soon enough. I barely slept in the hotel as she was only settled in the carrier and I didn't want to take her out. The car seat was also uncomfortable, as our 5-point harness dug into her legs. I sat in the back and sang to her and tried to keep her from screaming. Over a week later and she has calmed down to almost her normal self, with occasionally episodes of high pitched screaming as she tries to stretch as well as shorter naps resulting from when she tries to stretch her legs and can't. I still miss my sweet, easy, cuddly baby. But this isn't something we can change we are just taking it one day at a time.

Honestly, it's been the hardest part of parenting yet and I know we are just getting started. Someone once said that choosing to be a mother is to forever choose to have your heart walking around outside your body. Even this small blip makes me understand that quote in the most real way. While everyone says, 'She'll get used to it' and 'It could be worse' and 'it's only for a short time', I feel like I've been cheated. Cheated out of precious skin-to-skin contact, out of dressing her in the cute outfits I had just bought, out of tiny toes and out of normal, newborn pictures and cuddles. While these all may be small things, that doesn't make my feelings any less important or less real. No consoling words seem to help, and I can only hope that in 11 weeks time the harness can come off and no further treatment is needed.

 

Thanks Auntie Kristen for buying clothes especially made to fit over a harness!

I'm so sad that for the first time since meeting Eleanor, I am wishing for the days to speed by. Wishing away these precious days, and looking forward to the day when I can have my baby back. I want it to be 11 weeks from now and for her harness to be off. I want my lovely normal, soft, sweet girl.