‘We Are so Proud Of Everything He Has Faced’- Mary’s Story

‘We can’t see all four chambers of your baby’s heart’ were the hardest words we’ve ever heard. After hearing this devastating news, we were so anxious to know what this all meant, but what with the heart being one of the bodies most vital organs, we knew it wasn’t good. Our local hospital completed an immediate referral to the foetal heart specialist at The John Radcliffe hospital. Whilst we were desperately holding out for some answers later that day, we couldn’t be seen until the following Monday and that four day weekend was the longest and most challenging of our lives!

After another scan and speaking to the specialist Doctor we were given some incredibly hard decisions, end the pregnancy or face a terrifying and very risky surgical route… My husband and I felt hope and decided we had to give our unborn baby a chance. Initially we wanted clear cut answers to questions like when would he need his surgery, what was the success rate, how long could we expect him to survive and what would his quality of life be like.

When the doctor told us that there were so many factors and influences affecting the outcomes to these answers, we felt completely out of control, devastated and anxious.

After a number of weeks going through what felt like intense grief, we sat down and had a heart to heart about how we were feeling. Ultimately we decided that the following things were necessary: be positive, live in the moment and try to relax and enjoy the rest of the pregnancy.

Todd was born in a calm, positive and natural way. After a brief, yet precious cuddle he was taken away to PICU. Four hours later we saw him for the first time and were amazed to hear that he didn’t need the drug Prostin (vital for keeping blood vessels open) wasn’t requiring oxygen and that we could hold and cuddle him. A lot of tears flowed that evening. After a short and uneventful stay in High Dependency we were sent home with our new bundle. Twelve days later, out of the blue, our consultant rang and said we needed to head down to Southampton the following day for a catheter procedure. We had been prepared for possible open heart surgery days after he was born, but this was unexpected and so hard to deal with, mainly because we hadn’t had time to mentally prepare for it. The catheter went well, although handing over our boy – who was so small and delicate – was incredibly difficult.

At five weeks old, Todd has his first open heart surgery to fit a band around his Pulmonary artery (PA banding). Once again we handed our boy into the arms of a Doctor who would have Todd’s life quite literally in his hands.

The agonizing wait to hear how the surgery had gone felt like an eternity, but we tried to keep ourselves busy with mindfulness coloring books and an endless supply of treats and snacks.

When the Surgeon returned, he had deep dark red imprints around his eyes from where he had been wearing his magnifying lenses; a crucial piece of equipment when working on a heart the size of a walnut. The operation was a success, although the first night in PICU was terrifying as his oxygen saturation levels kept dropping dangerously low but after a few rocky days, Todd eventually came off his ventilator on my birthday – it truly was the best present I could have asked for.

Todd has another catheter two months later and I remember feeling so upset when they said that they’d had to perform some CPR on him during surgery. When the equipment passes up through the blood vessel and enters the heart it can tickle or nudge the electrical node which causes the heart to stop. I remember the surgeons being quite blasé about this, as though it wasn’t a big issue at all. Now I understand how complex their work to make handmade hearts is, I can see why.

At five months old, Todd faced his biggest surgery yet. The Glenn procedure. Todd was put on the heart lung bypass machine which stopped and drained his body of blood so that the skilled surgeons could cut off and redirect his blood vessel to send blood straight to the lungs, not the heart. The build-up to this was very worrying as Todd’s lung pressures had to be within a certain range for the operation to go ahead. The prior PA band procedure ensured this and was a crucial piece of surgery for the Glenn to go ahead. Throughout the 8 hours that he was in surgery, I once again dug out the colouring books and spent my time colouring in a beautiful and intricate heart as a gift to Todd. After an extremely worrying wait, we saw our little boy in PICU, unrecognisable under all of the wires and looking extremely puffy – a side effect of going on bypass. Over the next few days, we sat by his bed constantly, watching the monitoring screens for even the slightest of changes in oxygen level, blood pressure or heart rate. It was exhausting. After preparing and expecting a month long stay in hospital, we were home just after a week! The highs and lows are extreme but totally worth it.

Recently, Todd celebrated his 2nd birthday and has been surgery free for over 18months. On his birthday, I asked my husband if when we found out about all of this, he could ever envisage us at this point – both our responses were no. Living in the moment has been so important to us and we can honestly say that every moment has been incredible and worth all of the worry and stress.

Todd is energetic – if he’s not racing around the house on one of his many cars, he’s digging or watering in the garden, climbing on chairs to help me cook or sliding down his slide into his paddling pool.

Todd is happy – hospital visits and check-ups have been very difficult and upsetting for him, but we’ve always kept calm and smiled through it to help him see that it’s ok. He is so much better in this respect now.

Whilst life with half a heart is hard and Todd does get tired, we don’t let this stop him and try to encourage him and treat him as normally as we can. We are so proud of everything he has faced bravely and conquered, so whilst there is more surgery to face in future, for now we live for the joys we experience every day.

Be social with us - our latest tweets and posts

    The Youth Zone is our dedicated support network for young adults aged 11 to 17 living with a single ventricle heart condition. During lock-down, we have been working hard to keep our youth members supported and connected with each other.

    We just wanted to shine some light on this awesome bunch, as they have come so far and achieved so much during the Covid Crisis. One of our highlights being this video, a 26 minute exercise challenge via Zoom, all in support of LHM for the 2.6 challenge. They smashed the routine and raised over £500 for us! Thank you.

    The group keeps in touch through regular Netflix parties and lots of healthy discussion on the private message forums, as well as having access to 1-1 support provided by LHM whenever they need it.

    None of this would be possible without our youth leader Lexie and our awesome youth mentors, please can we all thank them for the incredible work they have been doing for these brave young people throughout this crisis.

    Visit the youth zone here lhm.org.uk/youth-zone/
    ... See MoreSee Less

    2 hours ago  ·  

    View on Facebook

    Open Heart Surgery during Lock-down | LHM parent member Rose shares some uplifting words for us.

    "We were very apprehensive about this surgery as the last one he had was a very long recovery. He literally has made so many people proud, Naayt had his open heart surgery on the 11th June and was discharged 11 days later... home! yes, home!"

    "I couldn't believe it either. You will be so amazed at how pink they are after this surgery and its so lovely to see. The only thing that stops them is the drains which he had 1 left in literally 3 days before discharge and his inr being in range which happened on the day he was allowed home."

    "These kids are so amazing and I am so amazed at how fast they can recover and get through these operations."

    Half a Heart, Not Half a Life x
    ... See MoreSee Less

    18 hours ago  ·  

    View on Facebook