Every time I went for a pregnancy scan I was excited. I was cooking not one but two little people (insert smug emoji face) and I loved seeing their tiny bodies on the screen before me and hearing the rhythm of their drumming heart beats. Never, not once did I imagine that I would be giving birth to anything other than two healthy babies. The reality of my boys’ birth was very different. I went into spontaneous labour at 32 weeks and my boys were born by emergency C-section (neither of which I had wanted). They were whisked away to special care as we had expected and a few hours later we were told that twin two (Harry) had been born with a very rare condition called Goldenhar syndrome which meant that on his left-hand side he had no eye, eye socket, ear, nostril and he had a short under developed jaw.
To say I was stunned is a massive understatement and I have explained more in the moment that changed life forever as well as given 11 top tips when you have a special needs baby.
Recently I have been asked if I wish I’d have known about Harrys condition before he was born and my answer is never a straightforward one. Here are the reasons why I wish I had known and the reasons I am glad that I didn’t.
Yes
If I had of known about Harrys syndrome I would have had time to prepare mentally and emotionally to some degree. I would have researched the condition and known what to expect in terms of his appearance. I would have known about the various ways that Goldenhar syndrome affects babies and been aware of the worst-case scenario in my head so that I was as prepared as you can be for his arrival. Knowing that his spine looked unaffected in the early hours of his life would have been a relief and not just another terrifying ‘what if?’
I could have also prepared my family and friends. In the early days, being strong for them was incredibly hard as I was imploding behind a smile. I am the sort of person who takes pride in being able to help and guide others (I think that’s what makes me a good teacher) and so to not have the answers made me feel like more of a failure at the beginning. If I had known beforehand then I know I would have felt calmer and more confident in explaining the syndrome and its possible implications to others. Some people will say that other people’s thoughts and feelings didn’t need to be a concern for me in the early days but one of the lego blocks of who I am is that I am able to reassure the people who mean the most to me. I couldn’t do that for such a long time and it was one more factor that damaged my sense of self.
No mother should ever say that the day her child(ren) were born was the most traumatic day of her life. But for me, it was. I remembered the moment the doctor came with his news at 10.30am every year on the boys’ birthday for years. And it wasn’t just a fleeting memory. I vividly relived the doctor’s words, his gestures and I felt the searing pain, the crushing sadness and the overwhelming guilt as if it was happening all over again in that very moment. Over the years the duration of this got shorter but looking back now I do think that I had a form of Post Traumatic Stress Disorder (PTSD) as well as Postnatal Depression (PND). If I had known about Harrys syndrome then I know for a fact I wouldn’t have relived that moment over and over again. It was the shock of the news that trapped me in that moment and replayed it on some sort of torturous loop for years.
No
From the moment I peed on that stick and saw the life changing blue line appear to the day I delivered my boys I felt amazing. To know that Mark and I had created another little human was fantastic. To find out that we’d somehow managed to make two was overwhelmingly incredible. I know people who have struggled to conceive and I know it’s not an easy process for many so I felt blessed to be pregnant and, if I’m honest, a bit smug to be carrying twins. I felt like I needed a ‘SU’ t-shirt and cape (Super Uterus in case you’re wondering). I watched all the twin mum programmes in the name of research, I ate for three (still do unfortunately!) and I LOVED telling people I was having twins. I do have to say I wasn’t a fan of having my bump caressed by strangers, what’s that all about?? And there are some things that you should just never say to someone carrying twins but I can hand on heart say that I felt complete, full of love, hope and joy for the 32 weeks that I was pregnant. Knowing about Harrys syndrome would have changed all of that. I am thankful that I can look back on a pregnancy free of worry and stress – the following 12 years have provided me with more than enough! Looking back on my pregnancy makes me feel so happy.
As soon as the boys were born I felt different to the ‘other mums’. I didn’t get to take my babies home straight away, or swap labour stories in the mother and baby groups relaxing over a cup of tea (I’m sure it’s not quite so twee but I just have no experience). My health visitor didn’t disappear after a few weeks in fact it felt like a new professional every week came into our life to give us advice on feeding, sleeping, vision, hearing, posture, reconstruction etc. As well as drowning in dirty nappies I was being dragged into the quicksand of depression and grief. Quite frankly, the early weeks were hideous. I was never the mother I planned to be and although in many ways I am sure I’m better, I am always grateful that for the duration of my pregnancy I was the same as any other expectant mother. I have that in common with other mums when we chat about life with our children now. Sometimes that’s all I have so I love it even more.
If someone had told me during the pregnancy about Harrys syndrome I may have been given the option to terminate the pregnancy (not sure with it being a twin pregnancy actually) or consider adoption. I would have taken neither option. That’s not to say that I’m any better than others that would have done and I’m not judging but the news wouldn’t have made any difference to our life now. He would still be my boy. Life would still be the confusing, all consuming, chaotic mess of love, laughter and lessons as it is today. Knowing would have made no difference to the boy he is and though it might have helped me to prepare mentally and be more ‘present’ with the boys from their birth I think we’d have got to the same place eventually. Him as my sunshine boy, me as a mother dependent on cheese and gin. Somethings are just meant to be.
So, there you have it. I still don’t know if the answer is a yes or a no but I do know that thinking about the past doesn’t change the future. I chose not to pursue any potential claim against the hospital for the trauma experienced from not knowing. I preferred to invest my energy in moving forward and at the beginning that was painfully difficult. Like rehabilitation after a car crash it was one foot in front of the other. One step at a time. Eventually I walked alone and now I pretty much sprint…..usually to the cheese aisle.
But more importantly, I’m in love with a life I would have never chosen. Like I said, some things are just meant to be.
Chat soon
Charlie xxx
If you are the mum of a child with a diagnosis and/or additional needs and you would value hearing from another mum who truly ‘gets it’ and often says what you feel too nervous to admit (plus a great community!) then sign up to my newsletter now!
As a father of twins too I can relate to a lot of this. Ours came at 29 weeks and had their battles.
We were blessed that they came through them unscathed. I was told one wouldn’t last the 2nd night but she proved them wrong.
First 3 months of their lives spent in Hospital. One sent home on oxygen for the next 6 months. A mixture of joy and haRd work like I’ve never experienced and I’m a grafter. Never felt so hopeless, useless tired but happy at the same time.
Watched parents not so fortunate who sadly lost their beautiful babies and others who have to cope with complications but we all share the undeniable love for our kids.
I still get teary when I see/hear ICU on television. Obviously not really processed every thing from then.
My wife spent nearly 3 weeks in hospital too. Could have lost them all. Instead I have a family. The struggle to be a family makes it even more rewarding but unless you’ve gone through such times you don’t really understand it.
A bit like having twins. Having 2 kids at separate times is nothing like it.
Night feeds with one on every 3 hours and 1 on every 4 hours. ..try that for starters.. I needed more than matchsticks to keep my eyes open.
Love your posts. Can’t help but feel the love and pride of your kids in your words.
Andy
I totally get what you mean about still getting emotional. I cant watch One Born Every Minute as it makes me think of the experience I never had. Youre right that no one quite ‘gets it’ like a parent who has been through something similar and the struggle only makes us stronger parents and better people. Youre also right that I totally love those boys of mine and am proud every day to be their mum C x
Love this post Charlie. I often wonder the same thing. Not knowing during pregnancy means, like you, I got to enjoy my pregnancy relatively worry free. If I had known, maybe I’d have been better prepared. That said, Hugh at 7 is still undiagnosed so it’s not something they could have identified whilst pregnant. Had they known how profoundly disabled he would be, I’d have been terrified. But I echo your sentiments that I love this life that I wouldn’t have chosen. Fabulous post- thank you for sharing.
Thanks for your lovely comment Emma. Im glad that it resonated with you. C x
I love Harry’s smile 🙂 Another excellent piece thanks, Charlie. I had actually been wondering about this when you had mentioned previously that you didn’t have any idea before Harry was born that he had Goldenhar syndrome. I found myself wondering if foreknowledge would have helped and I hadn’t reached a conclusion. I know too that when life throws a challenge at you you have to keep putting one foot in front of the other. You’ve done much more than just that, of course and your ability to consider and discuss your situation and to express that so well is going to help many. Harry’s lovely and very lucky to have such a great mum.
Thank you so much for your lovely words. I really hope that I am able to help other parents see that an altered life can be a wonderful life C x
My pregnancy with my 17 year old wae marred by wrongly as it turns out the thought that my child had a 1 in 46 chance of having down syndrome . The doctor telling me i could have a termination had me running for the door and never going back .the outcome of my pregnancy would not have been any different but i have still the thought of what if
Yeah pregnancy can be wonderful but can also be fraught with worry and ‘what if’ C x
Lovely post.
My pregnancies were difficult. There hadn’t been anyone else with my complex chd have a baby at the hospital I was under (not even sure anywhere else in the country, it was over 20 years ago) & neither my obstetrician nor my cardiologist could say what the outcome would be. Nevertheless we chose to try & wouldn’t be without our wonderful children.
Glad you enjoyed the post and I agree that I wouldnt change the life we never expected now C x
A great post. I knew my son would be born with difficulties, but we didn’t know exactly what. It took 11 years to get a diagnosis and, even then, it is something so rare that we still know very little. I often wish I had not had that 20 week scan which told me there were “problems”. Having to tell others that there was something “wrong” with my baby was awful. He is who he is and everyone adores him. That is what matters.
Thanks so much for your comment Rachel. As you’ve read, I totally agree that knowing would have changed my pregnancy and thats the last bit of ‘normality’ that I had but life afterwards for us, as I am sure it has been for you, has been anything but ordinary and I wouldnt change it for the world C x
What an amazing story. Your adorable sunshine boy is very lucky to have you as a mom. I have a granddaughter with a similar facial disfigurement. Her condition is called Fraser Syndrome. For now, she walks around with one exposed eyeball (a lid was made, but it never closes) while the other eye is covered in skin. One step at a time is right.
Hi Karen, thanks so much for taking the time to comment. Im glad you enjoyed the blog and wish your granddaughter all the very best C x
What a well thought out topic and post. I can see great argument from both sides and, like you, if it were possible to know about any SEN needs before the birth you could prepare but then, to just enjoy our pregnancy as you say you did and not know is also a blessing. I think, personally, regardless of any special needs, our kids are our kids and they still get the same love and support. Any time we get with them is a blessing.
Definitely! Glad you enjoyed the blog and yes, the love is the same regardless C x
I can certainly relate to your article and thank you for your willingness to share your family’s story. I, too, had a child with a facial defect. She was born with a bilateral cleft. That was 29 years ago, and before that night, I’d never seen an unprepared cleft. You pose an interesting question and I have often wondered what I would have done if I’d known before she was born. But I have only the experience I’ve been given to know she is the greatest gift of my life…. and so are my other 3 who were born without a defect. Yes, her cleft has had several operations, but the odd thing is, I fell in love with her face before she was repaired (at 5 months and then numerous surgeries throughout her childhood). I actually remember feeling a little sad when she had her first repair. Bless you for your insight and the ability to help others.
Thanks so much Sandy. I loved reading about your love for your daughters face. I think its something we all take for granted and it’s a beautiful moment to experience something that happens so naturally, without even realizing it for so many parents C x