What it’s Like to Have a Child with Ehlers Danlos Part 1

Being super bendy isn’t always a good thing

For many people, Ehlers Danlos won’t mean anything. But if you were to say double-jointed, then most people would know what you were talking about.

When our daughter was born nearly 11 years ago, we had never heard of Ehlers Danlos. We knew about people who were ‘double jointed’, but this was often seen as an advantage or quirk than anything that might cause problems.

The Diagnosis

When she was born, we had no idea that anything was wrong. She didn’t feed very well at first, but the nurses just said she was a bit fussy. It wasn’t until nearly six weeks of minimal feeding and not thriving that we had to take her into hospital.

As new parents, we and in fact most of the medical staff, thought that we were overreacting. They couldn’t believe that she was so poorly and this is why it took so long to get her seen.

My wife was particularly upset, because our daughter didn’t want to breast feed. For many mothers, this seems so natural, yet my wife thought that she was doing something wrong, she thought that she wasn’t a good mother. This was made worse by the fact that she was a childrens nurse yet felt helpless to fix her.

It wasn’t until we had been in the hospital for about two weeks that we saw a consultant that was to give a name to our daughters suffering. He had seen many such cases and had found the link to Ehlers Danlos Syndrome or EDS as we would refer to it.

Our consultant wanted us to go to the London Free Hospital where he was based. He wanted to perfom an endoscopy to see if the reflux had caused and perminent damage to her Esophogus. This began a week of anxiety and worry over the impending procedure on our small baby.

Only my wife was allowed to sleep in the room with our daughter, and we couldn’t afford for me to sleep in a hotel. So I would stay as long as I could before going to sleep in the car in the hospital car park.

Trial and Error

The consultant told us that EDS was more than just being ‘bendy’. It was a connective tissue disorder that had varying levels of severity. In the most extreme cases, it can affect the heart valves and other vital organs. The problem that was causing our daughters issues was another common symptom, severe gastric reflux.

What followed was a long road of trying different medication and feeds to try a combination that worked. Eventually, she was given Omeprazole which we had to dissolve in a saline based solution. We also went through lactose free feeds like Nutramagen but she refused to drink it.

After some arguments back and fourth, we were able to give her SMA Gold. This was a high energy high calorie milk that we had to get on prescription. It was the first time that our daughter began to actively gain weight. Because she would only drink small amounts at a time, normal formula didn’t have enough calories to help her.

We also had to deal with her having a high palete. This meant that many of the usual teats didn’t work properly and she wouldn’t suck them. My wife found a company called NUK who were popular in Europe and Germany where they were made. They had a special design that was supposed to help with babies who couldn’t use other teats. We ordered some online as they were difficult to obtain in the UK at the time. Our daughter loved them and this helped even more with her feeding.

Within her first year of life, we as a family had been through so much. We has also learnt a great deal about our daughters condition that even now, continues to educate us.

Originally published at stevenpdaws.wixsite.com on February 26, 2017.

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