Patient Stories

Esmé Kelly

Hi! I am Michelle, Owner of UK based ‘Esmé & Frog – Spica Clothing’, and more importantly Esmé’s Mum!

Esmé is an IVF baby (ICSI) we tried for 10 years to have a child and were so blessed when the Ivf worked on the first cycle!

At 26 weeks I lost all my fluid and Esmé was born on Boxing Day at 34 weeks. She panicked us when she stopped breathing shortly after birth but was fine after antibiotics and a week in NICU. We were told she may need physio for her legs later on. Her legs were all over the place!!

And at the time we were more concerned with her heart and her weight.
And just getting her home!!!

At her 6 week check our doctor commented on her extra fold and we were referred to orthopaedics where she was fitted with a Pavlik Harness.

After only 2 weeks the Pavlik Harness was abandoned.

We were then referred to Great Ormond Street Hospital where we were told Esmé would need a closed reduction. I was in total shock as we had been told at Esmé’s last scan at our local hospital that they would probably just try the Pavlik Harness again!

So we got ourselves prepared for the op. Tried to move as we were up on the 2nd floor with no lift but to no avail and brought a new buggy, high chair and went through Steps Charity to get a car seat.
I joined the hippy baby group and tried to buy oversized clothes that Esmé would be able to wear.

Esmé had her op and it was horrendous. We were distraught. It was a truly horrible experience- we felt as though we had only just got her and now we had a situation in which we could loose her! At only 5 months old. All seemed well. Esmé had 3 months in the cast but 2 weeks out and her leg didn’t seem right so we scheduled an early X-Ray. The closed at failed.

She had come out of the cast with such long legs.

Esmé had to teach herself to sit up again, to hold her own weight and by the Summer was coasting and crawling but in the August she had her open reduction. We had got ourselves into a more suitable home with ground floor access ready for this op.

Esmé had an open reduction and a femoral oestonomy on our wedding anniversary and it went well! (Medically) but Esmé was much more distressed this time. We wish we had opted for the mild sedative as she was so panicked whilst having the anesthesia that she suffered night terrors for a month after. She was on morphine and then we had to wean her off of the morphine which was hard work! She was so much happier at home.

It was at this point I put her in a romper I had made and it fit! I quickly whipped up a load for her and decided to make them available to other mums too! They have poppers for nappy change and now I solely make spica clothing! My company is called Esmé & Frog. I’m on Facebook & instagram /esmeandfrog and we ship our spica clothing all over the world.

I thoroughly enjoy making spica clothing and love talking to the other parents about their experiences and being of help where I can!

At her 6 week review the x-ray looked good and the femoral head was finally forming so now we are waiting to be seen again in May to see where we go from here!

Esmé is happy and walking with her walker. We just pray that this is the end of it all now and our little miracle will be walking soon!

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Update: August 6th, 2019: We have since found out that Esmé has a chromosome disorder. A microduplication of chromosome 16p13.11 and will require further operations on her hip & leg.