Getting a diagnosis

posted in: Pregnancy, Suffolk Babies | 0

I’ve heard it so many times….”so what are you hoping for then, a boy or a girl?” the reply so often comes back “oh, I don’t really mind, as long as it’s healthy”.

But what if it’s not?

It’s a place I’ve been, so I’d like to share my experience with you in the hope of dispelling myths and improving outcomes.

I’ll take you back to the sonographer’s room, early in 2012. My husband and I were super excited to be expecting our first baby. We were both fit, young, with no history of disability in our families. So, as the 20 week ‘anomaly’ scan began, ironically, the last thing we were expecting was an anomaly. But then, there it was, clear as day on the screen, and the sonographer, clearly flustered, ushered us out for a walk around the grounds. By the time we returned, a senior staff member was in the room, and in seeing their faces, we knew everything had changed (I really don’t envy this part of their job).

Turns out, pregnancy, and the not knowing, was the hardest part!

The diagnosis for us was straightforward. Spina Bifida Myelomeningocele and Hydrocephalus. The ‘worst type’ we were told. Our baby would have ‘no quality of life’, we were told. She would be in ‘constant pain’ we were told. Within a couple of hours, the termination methods were being described to us.

Shocked? I was too, but from subsequent contact with other families, it turns out this ‘worst case scenario’ approach is sadly taken quite often.

It was a Friday, and by the Monday, we had managed to make contact with a specialist centre, dealing regularly with, and not intimidated by, cases such as ours. The outlook we were then given, although by no means certain, was a lot less bleak. It was my husband who then bravely looked at me and said, “we know what we need to do”. I will never be able to thank him enough for those words.  So, I urge you, if you ever find yourselves in this situation, always, always get a second specialist medical opinion. And more importantly, know that the path you choose cannot be judged by ANYONE who hasn’t been there, in that room, at that time, in those exact circumstances.

Week 1 of life

Of course, not all conditions are diagnosed in-utero, and not all conditions are easy to diagnose, or even possible to diagnose. But usually, once you know roughly what you’re dealing with, it is possible to reach out to charities and online communities, who will become more of a lifeline than even your excellent hospital team can be.

We were lucky enough to be put in touch with SHINE very early after our daughter’s diagnosis. SHINE is a charity that provides specialist support from before birth and throughout the life of anyone living with spina bifida and/or hydrocephalus, as well as to families, carers and professional care staff. We have received information and education, but perhaps most valuably, the opportunity to meet other families living with the same condition. This makes SO much difference, especially in the early days, I can tell you.

Early days

So, my top tips are:

  • Go into your anomaly scan, not expecting the worst, but at least with some idea of the things the sonographer is looking to rule out. This is probably what will happen of course!
  • If you have a serious diagnosis, don’t, for goodness sake, immediately Google it. I know this from bitter experience
  • Seek advice from a specialist medical centre as well as your local hospital
  • Find a relevant charity to support and further educate you
  • Hook into a specialist online parenting forum. You will find a wealth of knowledge here, and in time, become the experienced advisor which is extremely rewarding

I remember talking to a certain lovely man (a fellow Spina Bifida parent with an older child) when my daughter was a few months old. At the time I felt overwhelmed. He told me that I would come to accept, and normalise this condition, and that it would become “just another aspect” of my life. I couldn’t imagine what he was saying would become true, but sure enough, here we are.

Our daughter is now 7, full time wheelchair user, bright as a button, and one of three centres of our universe (we have gone on to have two further daughters, both able-bodied. Yes, our house is VERY pink). If we could have known then, what life would be like now, our anguish and torment, and if we’re honest, grief, would have been greatly reduced. But we could not have known, and we realise that for others their diagnosis brings more massive challenges, pain, and loss than we experienced.

I write, up until this point, from the perspective of what happens if you (your baby) receives a diagnosis. The reality is, thankfully, you are unlikely to ever do so. Therefore, I think it’s important to discuss what you might say to the parent of a new baby ‘born different’. How can you even begin to support them? How would I like to have been approached? The jury’s out on the:

“Special babies are only given to special parents”

Or

“I don’t know how you do it, I know I couldn’t”

Kind of lines.

I personally found them touching, but they tend to receive mixed reception.

The moment I became a mother

Ultimately, I think it’s about inclusiveness. Not ignoring the ‘elephant in the room’, be it a baby’s NG tube, oxygen cylinder, weird looking head and legs (that’s my daughter, so I’m allowed to say that 😊) whatever, but not focussing on it entirely. A parent of a baby with additional needs will probably want to talk about sleep, feeding, nappies etc as much as the next new parent. Don’t be scared of involving them in chats/moans/celebrations of achievement but be sensitive that their child might be reaching their milestones in a very different way to yours.

Here at Suffolk babies, we aim to provide a community in which all are enabled, included and supported. I could not have survived the first few years of motherhood without my ‘mum tribe’, who were very much on that steep learning curve with me and accepted me and my baby ‘warts and all’. Whether or not your baby has a disability, a serious illness or life-limiting condition, we’ll help you find your tribe and thrive within it.

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