Do I Wish I'd Known About My Baby's Diagnosis Before Birth?


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 I would give 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. They were whisked away to special care as is expected, and a few hours later, we were told twin two (Harry) had been born with a rare condition called Goldenhar syndrome, which meant on his left 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.

I have been asked recently if I wish I’d have known about Harrys condition before he was born. My answer is never a straightforward one. Here are the reasons why I wish I had known and the reasons I am glad I didn’t.

Yes — the truth shall set you free.

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 Goldenhar syndrome affects babies and been aware of the “worst-case scenario” so I could be as prepared as I could for his arrival. Knowing 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 more of a failure at the beginning. If I had known beforehand, then I believe I would have felt calmer and more confident in explaining the syndrome and its possible implications to others. Some people might 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 something that damaged my sense of self.

No mother should ever say the day her child(ren) were born was the most traumatic day of her life. But for me, it was. For years, on the boys’ birthday, I remembered the moment the doctor came with his news at 10:30 a.m. And it wasn’t just a fleeting memory. I 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 I do wonder if I had a form of post-traumatic stress disorder (PTSD) as well as postnatal depression (PND). If I had known about Harry’s syndrome then I believe 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 why it replayed in my mind.

No — ignorance is bliss.

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 my husband, Mark, and I had created another little human was fantastic. To find out 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 programs 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 people should never say to someone carrying twins. But I can say I felt complete, full of love, hope and joy for the 32 weeks I was pregnant. Knowing about Harry’s syndrome could have changed all of that. I am thankful I can look back on a pregnancy free of worry and stress. 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 labor stories in the mother and baby groups relaxing over a cup of tea (I’m sure it’s not quite so twee, but I 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. So 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, I feel that’s all we have in common, so I love it even more.

If someone had told me during the pregnancy about Harry’s syndrome, I may have been given the option to terminate the pregnancy (not sure with it being a twin pregnancy, actually) or consider adoption. Personally, I would not have taken either option. 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. Some things 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 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, one step at a time.

And more importantly, I’m in love with a life I would have never chosen.

Like I said, some things are just meant to be.

Follow this journey at Our Altered Life.

We want to hear your story. Become a Mighty contributor here.

TOPICS
,
JOIN THE CONVERSATION

Related to Goldenhar Syndrome

woman with her hair pulled back

True Beauty Comes From Authenticity – Not Perfection

I’m not perfect. I usually wear my hair in a way that covers my right ear. Not so much because I’m ashamed of it, but because 1) the hairstyle looks really cute on me and 2) if I don’t have to draw attention to my ear, then as my choice, I don’t. However, in moments when [...]

How to Deal With 'Trolls' Who Attack Your Child With a Disability

So, you may or may not have seen that Instagram took down two pictures of my son, Harry, who has a craniofacial condition. It means he has a unique face. I am a very proud mum, both of him and his twin brother, Oliver, and as many mums do, I love sharing photos and stories about [...]
Charlie with her twin boys

Instagram Takes Down Picture of Child With a Disability Claiming It Did Not Meet Guidelines

Charlie Beswick, author of “Our Altered Life,” started her Instagram account in February to show life with her twin boys in a real, honest and often amusing way. One of her twins, Harry, has a rare genetic condition called Goldenhar syndrome, which means he was born without an eye, eye socket, nostril or ear, and a short jaw. In [...]
Beauty With a Twist.

Learning to Embrace My 'Beauty With a Twist' as a Woman With Craniofacial Differences

I was born with three very rare craniofacial conditions: VATERS syndrome, hemifacial microsomnia syndrome, and Goldenhar syndrome. These syndromes caused me to be born with several facial and bodily deformities, and I’ve had 101 surgeries in my life. Growing up and having such a rare condition, I rarely saw anyone who looked at all like [...]