The things I would say…

By Sophie Williams

My son Tomasz was born in 2018 with Transposition of the Great Arteries. He was treated at Alder Hey Hospital and spent almost eight weeks there. He is now a happy little two year old.

Here is what present-day-me would say to comfort myself after my 20 week scan.

This is earth shattering, this is traumatic. You feel lost, scared and angry, I know. It’s hard to find someone who will sit with your confusion and not try to fix it, or offer you suggestions, in the hope they can ease the pain.

You won’t be thinking, ‘Thank goodness they’ve found this’. You’ll be enraged, wondering, ‘Why did they have to find this?’ However, what you’ll learn over the course of your pregnancy will shine a huge spotlight on the fact that finding this potentially saved your baby’s life. Your sonographer has done a remarkable job. Early detection and knowing about this in advance, will prepare you in a subtle but significant way, for the difficult events to follow.

Here’s some facts I can offer, things you don’t know now, but will bring you comfort:

• The cardiac team at Alder Hey Hospital, who will care for your baby, are phenomenal. I can assure you, your baby is in safe hands.

• You’ll find out you need to give birth in a hospital you’ve never been to, in another city, the very thought of which is panic inducing, but again, you are in safe hands. Liverpool Women’s are also phenomenal.

• Get your information from Tiny Tickers and The BHF, anything else will just confuse you. Tiny Tickers parent group, and the TGA group on Facebook will provide much needed connection with other families, going through a similar experience. Seek these out, they’ll be your go to for information and comfort, way beyond your hospital stay.

• Take notes, read up, make informed decisions. There’ll be medical professionals advising you on what’s best. Trust them, but know that you have choices. Process what they’re telling you and talk it through at home.

I know it’s overwhelming. It feels impossible to try and cope with all of this, on top of pregnancy, work, and preparing for a new baby. The latter being something you end up struggling with the most, I remember.

You’ll be made aware at some appointments of the risks, that there’s a chance your baby won’t survive this. I’m so sorry – it is so painful to hear – and impossible to process. I comfort you now, knowing that our baby came home. But believe me, I remember the agony of not knowing if that would ever happen. Every time you’re given a worrying statistic, or potential outcome, please remember that all babies are unique, and heart babies are tough. Try to focus on all the positive stories you hear from other heart parents, stories about babies who have achieved the unimaginable. It happens.

Please don’t wrestle with the guilt of not wanting to buy baby clothes, have a baby shower, or pack your hospital bag. It’s okay to be too scared to do these things, people who care for you will not expect you to.

You’ll handle this in a way that will bring you so much pride when you look back. In those early days, you’ll mother amongst wires and beeps and interruptions, and mastitis and hearing agonising cries and seeing awful things. You’ll be his voice, always at his bedside, always fighting his corner. This will cement in your mind forever, the knowledge that your bond is so uniquely strong. You’ll parent alongside your wonderful husband, and other wonderful parents, who will inspire you everyday. You’ll experience the best of our beloved NHS. You’ll be cared for by angels, who you now owe every smile, new word, milestone and hilarious toddler repetition to. Family and friends will be there for you in such practical and comforting ways. That, often invisible, support will be what gets you home with love in your heart, and the confidence to raise your child outside of hospital walls.

Only you and your other half will know how this feels. It gets harder and then it gets even harder, and at points it becomes unbearable, but make sure you support each other, one day it will be a memory.

Your motto throughout all of this is, “Just Keep Swimming”. It’s what I urge you to do now, keep swimming, keep going, keep going, keep going. Your baby has this in them, they too will try to keep going. They will fight when the days feel desperate, and they will fight when a good day suddenly turns bad. You’re never alone in this, and this isn’t forever. The swimming never really ends, but these huge waves that now try to pull you under, they will stop. One day soon you’ll feel more like you’re swimming on a calm lake – one where you occasionally put your foot on something and think, “Argh, what’s that?!”

When you’re finally bobbing along, you’ll often look at your son, and take a moment to enjoy witnessing a miracle. There he is. He is happy, strong and healthy – running down the garden, using his beautiful beating heart. The heart so many worked so hard to mend. I know it’s impossible to imagine, but here we are.

Thank you Tiny Tickers for the wonderful support you gave us after our 20 week scan and beyond. For all the work you do to improve early detection and save babies lives. Thank you to our sonographer at Trafford General Hospital, the team at St Mary’s Manchester, Alder Hey and Liverpool Women’s. To Alejandra, Danny and Alba, whose friendship we have been lucky enough to find because of CHD, and Tom Williams for being so incredibly brave.