Welcome to Evie's story
My name is Amber and I am a first time mum to the incredible Evelyn. I wanted to share our journey together with others with the hope that I can help other parents and babies. So please take a look at the information below and please feel free to add comments and questions... we're here to help!
Evelyn's Hip Spica Journey
Well I never thought I would be here writing a blog, let alone writing a blog about my daughter Evelyn, being fitted with a spica cast. This was certainly not how I envisioned our baby journey with our first child, however, no matter how hard or heartbreaking, I wouldn't change a thing.
I’m not really one for letting outsiders into my family, however, when Evelyn was diagnosed with hip dysplasia, panic set in. I searched the internet for advice, but I could not find any information based on what the process is in the UK and the equipment we would need to make her journey as comfortable and as easy we could and ensure we kept life as “normal” as possible.
I decided to write this with the hope that I can help other parents who feel like their perfect baby bubble has come crashing down around them and show that it is possible to make this experience a little bit easier for everyone.
I hope the information of Evie's story can help anyone who may be struggling and bring some much needed peace of mind.
Where it all started
Evelyn born
Evelyn was born on 22nd March 2023 at 7lbs 1oz via an elective c-section. Everything went to plan and there were no complications at all.Evie had her checks before leaving the hospital as all babies, however, her hips should have been checked more thoroughly due to our family history of hip dysplasia.
.jpg)
Evelyn's 8 week check-up
We went to the GP in May for Evie's 8 week check-up and her first jabs. The GP noticed that her hip was clicking and referred us to have it checked further.
Pavlik Harness Fitted
On July 12th Evie was fitted with the Pavlik Harness under the NHS. It took a long time to get an answer and we were told many different things. It was the hardest thing we had ever gone through.
Pavlik Harness removed
On July 25th the harness was removed. We decided to go private to get a second opinion and have been fortunate enough to be under the UK leading child hip specialist. He advised after an x-Ray that the harness had worked already, removed it and we booked 3 month check up to make sure her hip doesn't get worse again.
Follow up after Pavlik Harness removal
On 28th November we went for the follow up x-ray to make sure her hip had not declined and to our shock, it had. So much so that we were advised to have the spica cast fitted as soon as possible. We wanted our first Christmas with her and the doctor agreed, so we waited 6 weeks.
Spica Cast fitted
On January 3rd, Evie was fitted with the spica cast. It was a closed reduction, thankfully, so no surgery required. It was the hardest day of our lives as a family and the start of a whole new life as new parents.
Equipment List
Below are links and examples of everything we used and other recommendations
High Chair
We were lucky enough to have been gifted the Tripp Trapp Stokke high chair at Evie's baby shower. The STEPS website recommended this as the chair to have for a baby/child with hip dysplasia. However, you need to have the harness with this chair as the legs, no matter what angle your child may be put into, will not fit through the bucket seat.
https://www.stokke.com/GBR/en-gb/high-chairs/tripp-trapp/1001.html
Bean bag
My parents bought us a bean bag from Dunelm as this helped Evie have a little independence and play on her own. It has a harness attached, however, we didn't really use it as a harness, we used it more as a seat belt. You can buy it in Dunelm as it is easy to get hold of from there, but it is originally the Tutti Bambini brand.
Pocket Highchair
I had never heard of one of these before, however, my Sister-in-Law had seen them and thought it could work for Evie now that she was in the cast. She was absolutely right. It gives you the freedom to go out and have your child sit comfortably and safely at a table so they can eat. Evie is quite short, but do feel I should mention that we did always have to raise her up with whatever we could find whilst out.
Bath time
I knew bath time was going to be a challenge, especially as Evie has always loved having a bath. I bought these little bath toys that can work in the kitchen sink, as that was now Evie's new bath. They help to distract her while being uncomfortable and wishing she could dive right in! I also recommend having a jug as it really helps to rinse their hair.
https://www.amazon.co.uk/dp/B09MRV6G7L?psc=1&ref=ppx_yo2ov_dt_b_product_details
Clothing
I think this is everyone's biggest concern when it comes to finding out your child is going to be in a harness or a cast. However, John Lewis, Marks & Spencer and Next all do hip dysplasia clothing, from trousers, vests, baby grows and outfits and they do work. They may need a little manipulating in some cases, depending on the thickness of the cast or angle of their legs. For children in a harness, it is a little easier. I also found someone through Instagram who was amazing and makes all clothing specific for children with hip dysplasia. Her Instagram is @hiphappyclothes
https://www.johnlewis.com/search?search-term=hip%20dysplasia&suggestion=true
https://www.next.co.uk/search?w=hip%20dysplasia
Bed time
I was quite nervous about bed time as the cast needed supporting in different ways and I didn't know how we were going to dress her.
The gap between Evie's back and the cast was quite big so we needed to support her with a pillow. After only a week Evie's hair was thinning and getting very straw like from only being able to lay on her back. We bought a silk pillowcase and it has really helped her hair stop falling out and getting matted. It also keeps her cooler. There are endless options on Amazon
https://www.amazon.co.uk/silk-pillowcase/s?k=silk+pillowcase
We were fortunate also to have been bought a sheepskin for Evie at the baby shower by friends and thankfully this came in handy again once Evie went into the cast. Sheepskin helps to regulate a babies temperature, this helps due to how hot the plaster makes them. It is like being wrapped in double wall insulation.
Due to the cast making Evie so warm from her ribs down we only put her in long sleeved tops each night and then used a knitted cellular blanket over the top to keep her feet warm and her chest. You can buy sleeping bags for babies in harnesses or casts, however, The NHS does not recommend you use them for babies in the cast due to the heat.
https://www.tesco.com/groceries/en-GB/products/310087707
Prams
We have the Nuna mixx next as our pram and have always loved it. Evie does fit in it but I don't think it is comfortable for her long term. Our in-laws loaned us their travel pram by Joolz, which is slightly wider and Evie sleeps in it and is definitely much more comfortable.
The Nuna - https://www.johnlewis.com/nuna-mixx-next-pushchair/caviar/p5435819
Car seat
The car seat is called Opal by Maxi-Cosi. They offer a service called the Happy Hips Service where they loan you the car seat for a price. It is a fantastic service, however, the car seat, although, not really any other option, is not nice and is not the easiest to use. Please also be aware that this car seat is not compatible with ISOFIX. You have to secure this car seat with the seat belt.
This link is to the service they provide with an explanation on how the loan works and the cost.
Tiny throne
This was a purchase made later in Evie's journey as we had never heard of them or seen them. However, I would say it was the best thing we bought! Super lightweight and compact, comes with a slide on and off tray for eating and or playing. I can't recommend this enough!
Bibs
The fear of getting the cast dirty is crazy, however, it is inevitable, despite your efforts, that it will without a doubt get filthy. But, the type of bibs you use can help! There are so many brands but I would recommend Bibado because the bib goes over the top of the tray and offers more coverage.
Nappies
The most important equipment you need!! You do need to change them more frequently to ensure there are no poonamis or wet throughs. Yo also have to double nappy, this because very expensive. You also, need to size up. Please continue below as I will go into more detail on nappies and the process of how to do nappy changes. I promise it isn't as terrifying as it seems!
How to change a baby in a cast
As mentioned above, it really isn't as scary as it seems, but it is fiddly and it is definitely a longer process.
To start off with you have to double nappy, this is purely for extra protection but also helps pack out the space more to prevent the nappies from slipping.
You are advised to size use the size your baby currently is first and then use the next size up for the outer nappy. However, we decided to size up and use the same size for both the inner nappy and the outer. This definitely prevented accidents.
You then need to rip all of the tabs off of each nappy, this is because if they are left on they can cause skin irritations.
You then simply need to slide and tuck the nappies in. I recommend having them sit higher at the back because that is how they have to sleep so prevents any wee running up their backs. You still fan them out as flat as you can and ensure that the frills are out.
For the day we used Fred & Flo Tesco nappies as they are cheaper for when you are going through so many nappies a day. Also, don't make the mistake we did, if the outer nappy is unsoiled, do not throw it away, use it! Take the inner soiled nappy out, put the outer nappy in and add a new nappy to the outside, saves money, time and waste.
We struggled with the bedtime nappies at first as we were using Pampers pull-ups due to Evie being such a wriggler and having so much milk before bed. We continued to use them as we had to many and just ripped the sides so that they would go on her, but, they sprung back too much as they are so elasticated.
It wasn't as easy to find but, we did find Pampers nappies that were not bedtime pull-ups but were still as absorbent.
We ended up doubling up on Pampers nappies at night, more so, so that we could sleep more peacefully knowing she had two 12 hour nappies on.
Is this a disability?
Short answer, yes. In the UK, your baby once fitted with a spica cast is entitled to a blue badge. I know it seems upsetting that your baby is classed as disabled, but you will be thankful for it when going out to busy places. You need the wider parking spaces to be able to get your baby in and out of the car. Don't be daunted by it! Apply for the blue badge and make your life easier.