Let’s start where it all began, the morning of July 10th 2019 my then 9 month old baby (Suzie) fell from a standing position, she seemed to bump and fall more than my other children as babies, I had planned to take her to have checks with a doctor, I thought maybe her hearing was off so her balance was, anyway I picked up Suzie from a fall that morning and checked her over everything was fine no marks and she settled fine, unfortunately I had my back to her because I was making her morning bottle so I didn’t see exactly how she fell, I give her the bottle she was ok no indication anything was wrong, fast forward a day I noticed a spongy area to the back of her head had came up, I immediately rushed to hospital crying something is wrong with my baby please help me, I waited and got a CT scan it was after that I could then see doctors looking and acting different toward me and I was about to find out why, CT showed my 9 month old daughter had a linear skull fracture with a subdural hematoma to the back of her head, I began to tell the doctors she’s really clumsy and seemed to fall more than my other babies while learning to crawl and stand, I realised after sometime this hospital believed my baby was harmed they said she couldn’t fall like that and injure that way even though she did, they removed my 3 daughters and placed them with family my life was shattered and a pain I’d never felt, my beautiful innocent daughters had to move in with other family.
I was the only one ever alone with my baby and knew I’d done nothing wrong, so after my initial shock I began to think more clearly, I knew I had weird bones that bend and dislocate differently to others, I also have scoliosis of the spine and diagnosed with a vitamin D deficiency and many more health issues that point to something else, I was often falling and dislocating as a child myself, I spend many days and nights researching, I realised there was something called EDS Ehlers Danlos which matched my symptoms very clearly and it is genetic more research led me to find Dr Michael Holick who is an expert in EDS, Dr Holick was from the US and I am from the UK but I was desperate for answers, I thought let’s message him anyway maybe he can help me maybe he will see my email, I was blown away when I got a reply from Dr Holick (I think I even cried) finally someone who truly listened and understood these weird bones I have, I was able to explain my story and suspicions of having EDS to him and he listened and advised next steps, so I then went to my own doctors and got all medical files for myself and daughters I sent these to DR Holick with pictures of myself doing the stretch criteria for EDS also including X-rays including my daughters eyes where the white are blue he was able to confirm EDS in myself and given my daughters regular falling and skull fracture with hematoma my little girl had inherited it, Dr Holick explained so much and give so much information on our condition, I felt better equipped for caring for my daughter in the knowledge she may fall more than other children (she is 6 year old now and yes that is the case also her teachers now have the same issues in school with her) she’s extremely hypermobile and can now show the criteria moves herself now she’s older.
My next fight was using the information and knowledge Dr Holick taught me about this condition to get specialists in the UK to listen, Dr Holick’s information alone could have ended our hell earlier but due to being in US I couldn’t use the diagnosis in the UK but I could use the information he gave me in the court documents.
I booked in with a GP (doctor) who agreed to send me to a rheumatologist who also agreed I show signs of a connective tissue disorder as Dr Holick said and sent me to another place to be assessed unfortunately for me not many doctors over here know about Ehlers Danlos so getting that diagnosis proves extremely hard, I was however able to get a diagnosis of Hypermobility Spectrum Disorder, before this diagnosis came 2 specialist doctors were paid to give report on Suzies medical file with my account of her fall to be used in court and one of these specialists asked why the accusing hospital did not check the family history, he also pointed out that my other daughter is autistic and autistic families are often hypermobile families too he went on to say the hospital should have checked the family history, why did they not check? they also had the information in court documents that Dr Holick gave me about Ehlers Danlos as I was able to get some of it in the court documents, the case was dropped we won and the judge sent our case to the head judge due to the failings in our case but this time it wasn’t me having to answer to a judge it was now the professionals involved having to explain themselves to a judge.
Dr Holick saved my family he listened he believed me he showed me information about EDS and explained why I was different (I always knew I was different but I didn’t know why or that it was genetic).
I write this story from my bed as unfortunately I am now chronically ill due to hEDS and all the linked medical issues, I have three 9 inch size screws keeping my right hip in place and my other hip is also displaced so will need to have screws put in next, my scoliosis seems to get worse over the years, my knees are going too, my thumbs are constantly dislocating.
It is a scary fight proving you are different because many don’t understand this condition, the reason I continue to fight hard is because I know that getting these answers will help Suzie as she gets older and it will also keep us prepared for when she has her own children too.
Dr Holick helped save my three daughters from going into care and give me strength to fight for the truth he also give me the information to be better equipped with knowledge on myself and my daughter having a connective tissue disorder, I could not thank this amazing man and his team enough, I was also able to go on and use the knowledge he give me and support other parents getting diagnosed in the UK Sheffield clinic and get their children back with loving parents, I do want my HSD changed to hEDs sometime but unfortunately I am to unwell to travel to Sheffield so for now we will keep the HSD to protect our family in future but we will still fight for the correct diagnosis along the way.
Thank you to Dr Holick and team for saving my family.
Kimberly
