Living With Global Development Delay

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I remember my first encounter with the phrase “Global Development Delay” – it was written on a paediatrician’s assessment of my daughter. It felt such an enormous and scary phrase, but at the same time incredibly generic and wooly. Over time it seems less scary, but the woolliness is still there. It appears to be a “catch-all” term for those children who are failing to meet those dreaded developmental milestones, such as learning to walk and talk.

But, let’s start at the very beginning.

I had what was termed an “unremarkable pregnancy” – it felt pretty bloody remarkable to me. It was only when “A” was born weighing a tiny 4lb 4oz at full term, they realised that I had undiagnosed inter-uterine growth restriction. She spent the first few days of her life in the NICU, but she seemed to be healthy, if very small. The first day we got her home, I thought we were going to have to take her straight back to hospital after a mis-timed dosage of the magnesium we were sent home with made her sneeze and spit up for about an hour! We were terrified of this tiny bundle!

The first few weeks of her life went by- as it does with most newborns – in a blur of tiredness; worrying about whether she warm enough/too warm, worrying about her weight and obsessing over poo. What is it about babies that turn us all into “Dr” Gillian McKeith, examining every poo in detail?

At her 6-week review by the health visitor we were asked whether she was smiling yet. She wasn’t. “It’s nothing to worry about, but I’ll just write I down in her book”. She then repeated that it wasn’t anything to worry about a further five thousand times. Nothing makes you worry more than a health visitor saying there is nothing to worry about.

What followed were periods of total milk refusal and endless visits to the doctors and the hospital. Ever tried to get a urine sample from a 12-week-old baby? That is a skill in itself! At one point, the hideous phrase “failure to thrive” was uttered by the GP as A began to drop away from the 0.4 percentile line. Could there be any worse terminology than that – talk about making me feel like a complete disaster of a parent – I couldn’t even feed my own child. I fought for, and got, a dietician referral.

As the months went on and the babies from my NCT group began to achieve milestones, I kept waiting for A to do the same. They didn’t materialise. The questionnaire I had to complete for her 8-10 month review with the health visitor felt like a “What CAN’T A do?” questionnaire. It was the most depressing form I’ve ever completed. I quickly unsubscribed from those helpful emails that remind you what your baby should be doing as the months go by.

By her 11th month, A was still unable to sit unsupported. Friends and family assured me “she would catch up” and told me stories of distant acquaintances who had children that didn’t walk or talk at the expected age, but are fine now. It was well meaning, but didn’t do much to ease my concerns. I’ve lost count of the number of times I’ve heard, and even uttered, the phrase “she’ll catch up” (with that every present nagging voice in the back of my head “yeah, but what if she doesn’t?”). Her paediatrician referred me to physio, and community input from Kaleidoscope in Lewisham.

It was at this appointment where A was “diagnosed” with Global Development Delay – she also has low muscle tone and hyper-mobility; her legs can bend at remarkable and unlikely angles! We are counting on an Olympic gymnastics medal at some point!

One year down the line and A has made some progress – but she has in no way “caught up”. When you are one-on-one with her you can almost forget her delays but at a gathering of her peers it hits you like a punch in the gut – whilst her friends run around and begin to chat, she is bottom shuffling around and babbling but without any meaningful words. She will be turning 2 soon, and this birthday feels bittersweet – I can’t believe my darling girl has come so far, but at the same time serves as a reminder of how far there is to go.

I don’t know what the future holds for A; whether this early intervention will help her make significant progress or if she will remain significantly behind in her development. It’s scary to imagine what might come, but as much as it sounds like a cliché, we try to take every day as it comes and celebrate even the smallest gains. Parenthood has certainly not been what I imagined – but then I am sure that is true for most parents. The guilt is ever-present; when I’m letting her play, I should be doing her physio exercises or working on her speech. I’m sure most parents feel this guilt too.  Although it has been a challenging road walked thus far, there is always hope – hope that with time A will make up the physical and mental differences in her development.  In equal measure however, the nagging voice at the back of my mind urges to me prepare for the worst-case scenario – that the developmental problems A currently faces will spiral into more serious issues as she continues to grow in the coming years.  Because in its nature, Global Development Delay is such a encompassing, vague, umbrella term. However, that umbrella is broken, lets in the rain, and keeps turning inside out so that every time you put it up, you just don’t know what shape it is going to be.

There is little indication about what will happen next but whatever comes it will not change the fact that A is a delightful, loving child who brings me joy and worry in equal measure.

For more information about GDD:

https://www.mencap.org.uk/learning-disability-explained/conditions/global-development-delay

https://m.facebook.com/groups/113544532021354?ref=bookmarks

https://www.undiagnosed.org.uk/

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