Note: this post has taken me 6 months to publish. It’s not pretty. A disclaimer about the names I will mention. Dr. Martul I noted his name myself. Dr. Peter Ellis was a name given to me by looking into her records. If that is inaccurate, it will have been a mistake of the hospital. Which, as you’ll see below, wouldn’t be so surprising. Two names I was unable to procure and I will give them nicknames. But the hospital will know who they are and that’s the most important thing.

I firmly believe that one of the greatest contributions I can make in Rett world is to empower other parents to be professional-level advocates for their kids. To tell you stories of learning things the hard way. To tell you how I got Grace her DLA even though she was rejected 3 times. How I got the education system to pull their finger out and give her the eye gaze she was entitled to. And today, I will tell you how I failed to force the hospital to find her broken legs.

I want you to know that I cancelled our lawsuit just so I could tell you this. Because I was told I couldn’t speak openly until that was over and this is far too long to be sitting on the information I have. Far too long to be silent and not be able to tell you what I should have done. Too long to wait to say to you:

Do not fear being too forceful if you feel your child isn’t given the care they deserve.

I believe that change will only come if people are educated. If I simply sue, it will help me vent my anger at the hospital, yes, but what won’t likely happen is that the Drs I name below will not hear me tell them how they failed my daughter. They won’t hear me say: non verbal children need to be taken seriously. They won’t get the message that they shouldn’t let their guard down because it’s Christmas. They won’t learn that people who don’t walk are at a risk of osteoporosis (which I thought was common knowledge but I’m happy to educate them). And, mostly, they won’t get a chance to give us the apology we deserve.

I will name names. And I will call certain doctors to account for their actions. Hold on folks it might be a bumpy ride.

The crux of all of this is that Grace broke her legs a couple days before Christmas. And I believe that Christmas spirit, hospital staff jollies and a complete disregard for the severity of Grace’s situation caused her to be in excruciating pain for 5 days. So much pain that her body was shutting down.

It’s been said that breaking one’s femur (the longest, thickest bone in the body) is “more painful than childbirth”.

So imagine that happens to you on both legs. And you can’t talk. And it remains for a whole week and on top of it all, your parents think you just have soft tissue damage (I have that in writing from the hospital) and so they keep trying to exercise your legs, get you dressed, move you around like it’s no biggie.

She did what any body under such strain would do…she shut down. Grace checked out of reality for 6 whole days. She slept about 23 hours a day. She shook. Moaned. Sweated. Ground her teeth. Curled up like she was bracing herself constantly. We thought she had the virus which had been going around so we gave her simple pain relief and monitored her temperature. Bloodwork showed that she didn’t have markers for infection and so we can only conclude that this was her body responding to excruciating pain.

So now that I’ve painted the picture, here’s what happened:

• On the 22nd, her legs broke during a powerful seizure. We didn’t realise this until the 23rd.
• On the 23rd, she was ambulanced to Queen Alexandra hospital in Cosham.
• She was the only kid in the E.D. (emergency department)
• She was seen by a Dr. _______ (we’ll call him Dr. Captain Obvious). I told him I was concerned about her femurs, hips and knees. In the letter at the top of this post you will see that “mom was concerned about her knees but we didn’t examine them.” Smoking gun. I’ve since been told by her bone endocrinologist that, yes, that spot at the knee is the most common place to break your femur. So it wasn’t rocket science, really. It should have been found.
• While we were seen by Dr. Captain Obvious, a more senior Dr. (in a sweater, not a uniform…so we’ll call him Dr. Christmas Jumper) was within sight but he never came to examine Grace. Instead, he jollied with nurses, talked openly about co workers and patients (by name I might add) and they all were enjoying the Christmas spirit and empty E.D. while Grace was experiencing the worst pain a person can experience.
• Dr. Captain Obvious ordered some x-rays, but not of the knees. Hell if I can understand why, considering that her discharge letter admits that I asked them to.
• Dr. Captain Obvious said it just seemed “too unlikely that she would have broken both legs” and that she was probably just not bending her legs because she pulled a muscle. So she was diagnosed with ‘soft tissue damage’ and sent home.
• Here is where I failed. My gut told me she had broken her femurs because I’d seen it so many times before in other rett girls. And I knew that this was the age when it often happens for the first time. But I let my guard down, I gave in to the luxury of just trusting the hospital and convinced myself I was a crazy mom going overboard.

So we took her home, suffering, and started trying to stretch and exercise her pulled muscle. I massaged her legs, further displacing the bones, while she screamed and shook and looked me dead in the eye begging me not to touch her anymore.

On the 28th:

• I took her back to the hospital where we met a Dr. Peter Ellis. (the only Dr. not on my shit list). He was on it like a rash. He did was needed to be done and in quick order. He was kind, caring, cautious and uber attentive and he delivered the news I was dreading: she broke both femurs just above the knee. He said, “don’t give her another feed. She may need surgery soon.”
• On that same day, we encountered an orthopaedic registrar, Dr. Luis Martul, who told us that teams at Southampton General Hospital and Queen Alexandra Hospital were in talks about which would be the best hospital for Grace. He claimed that “Southampton are better equipped to care for Grace” so she may be transferred there.
• Grace was put on morphine and given temporary casts while still in the E.R.
• Dr. Martul eventually delivered the news that because “we didn’t catch it sooner”, Grace couldn’t have the surgery required without needing to drill into her bones. Too much healing had already taken place. It was at this point that I schooled this Dr. on exactly why it “hadn’t been caught” and that this was 100% down to hospital neglect. He admitted fault and quickly apologised (which according to our attorney is NHS policy).
• In the meantime, they called social services and an emergency social worker flew in and took the whole department to task. She happened to remember that we called to let social services know what happened on the 23rd. She claimed that social services would be opening an investigation for neglect of care against the hospital and not us. I don’t know what happened with that as of now.
• While in the presence of this social worker, Dr. Martul quite ungraciously attempted to pin this disaster on me when he asked, “remind me…what did Grace hit when she fell and broke her legs?” I had told him 3 times over by this point that she broke her legs during a seizure. When he left, the social worker told me exactly why he was so crass and that he was perhaps attempting to trip me up and make me say I did it.
• In addition, Dr. Martul claimed that “because she doesn’t walk”, surgery was pointless. Straight legs are a luxury afforded to kids who can walk, I guess. My bad.

Grace was admitted to the Shipwreck Ward (great name, right?) and there she stayed for 10 days getting a variety of different casts and a chest infection. At this point, I have to say that the nurses were incredible. Apart from the time they tried giving Grace a nurse with a cold (I kicked her out), the care she got was incredible.

Wheelchair services…we have still not heard from them. They never adapted her wheelchair. We had to hack it in order to take her home.

There was a point during the morning rounds where I asked the orthopedic surgeon guy (who in the UK are called “mister” and not “doctor”) Mr. Richards, “why didn’t Grace get surgery for this?” He said it was because QA Hospital wasn’t equipped with the high dependency unit she would need post-opp (which Southampton General did have). So I asked, “Ok…so why didn’t she go to Southampton?” Answer: “Because she didn’t have surgery.” Again: “Ok and why didn’t she have surgery?” Answer: “Because she didn’t go to Southampton.” Now, I’m no surgeon. But…what?! I think we call this circular reasoning, yes?

The fact is, Grace didn’t get the care she required…she didn’t get surgery and she was in horrific, excruciating pain because, as Dr. Martul and Dr. Peter Ellis both admitted, her broken legs weren’t found soon enough. Because on the 23rd December, while there were no other children in the E.D.,Dr. Captain Obvious didn’t listen to me, Dr. Christmas Jumper was having Christmas jollies with the nurses and I let my guard down and trusted them.

What are the takeaways from this?

• Non verbal children are discriminated against
• Non ambulant children are discriminated against
• People who don’t walk are at a risk of osteoporosis. And #sorrynotsorry but if you’re a Dr and you don’t know that, then you, my friend, are an imbecile.
• Doctors can be dumbasses and need to be told what to do by “expert parents” who know more about Rett syndrome than they ever will.
• Do NOT give up the fight. Do not worry about being a bitch, rude, a difficult parent, a pushy person. Your assertiveness may be misinterpreted as aggression and you just need to be ok with that. Their feelings do not matter. Your daughter does. A sore ego will heal. But I doubt that Grace will ever forget her 5 days in hell.

Grace is now all healed up but our family has been forever changed by this experience. We have learned new ways to handle her, care for her bones and now we embark on a lifetime of being on high alert, uber vigilant, overprotective, to avoid this ever happening again. And Heaven help the next doctors who don’t listen to me.