“THE AMAZING CHARITY MADE IT A LITTLE EASIER TO BE SO FAR AWAY FROM HOME, EVERYTHING AND EVERYONE WE KNEW.”
“Last year, our daughter Francis, was in an induced coma on Father’s Day following surgery, so this year, having her home will be particularly special for my husband, Stephen. Stephen is Francis’ full-time carer, and right from the moment she was born, they shared an unbreakable bond. Stephen accompanied her on a tiny plane from our home in Jersey to a specialist neonatal unit in Brighton, and whilst it took me a little longer to bond with our tiny, vulnerable baby – she was his little girl right from the start. During our months in hospital, he learnt every medical procedure he could from the nurses so that he could do everything possible for her, including training to help if her airway collapsed, a complication of her condition. We hadn’t been home long when one night she stopped breathing. It was only because of Stephen’s persistence administering CPR that she is still with us. So until she can, I’d like to say thank you and Happy Father’s Day, one day she’ll understand just how lucky and loved she is.”
Guest blogger: Jo
In December 2017, our daughter Francis was born eight weeks premature after my waters had broken ten days earlier. She was born at our local hospital in Jersey. Though she only weighed 3.5lbs, my husband and I just thought she just needed to grow and that our local hospital would be able to support her. However, very quickly we discovered that she had been diagnosed with Tracheal-Oesophageal Fistula (TOF) and Oesophageal Atresia.
Oesophageal Atresia means the baby is born with a blind pouch at the top of the oesophagus, preventing food from reaching the stomach. In Tracheal-Oesophageal Fistula, the top of the stomach is joined to the windpipe, which can allow air to pass into the stomach and stomach acid to pass into the lungs. These are a rare set of congenital conditions of the oesophagus and trachea and both meant that she would need surgical intervention. Without that, the conditions would prove to be fatal.
That evening, the hospital flew my husband and daughter to Trevor Mann Baby Unit in Brighton, over 200 miles from home. I followed the next day and we were told we would be away for roughly two weeks.
Francis underwent her first surgery at just two days old. The fistula repair was successful, however the operation identified that she was suffering from a rarer form of Oesophageal Atresia; wide or ‘long gap’.
There are an estimated one in 35,000 babies are affected by this rarer condition. It wasn’t possible for them to repair this problem and we were told we would need to stay in the neo-natal unit until her due date at the beginning of February where they could assess her again and decide on the best surgical plan.
So we waited, and waited. Eventually we were transferred to the Royal Alexandra Children’s Hospital when she outgrew the neonatal unit.
Throughout this journey, we were fortunate to be able to stay at the on-site Ronald McDonald House Brighton, meaning we were never more than a couple of floors away from our little girl. We really benefitted from the emotional and practical support that this amazing Charity provided us. It made it a little easier to be so far away from home, everything and everyone we knew.
For the first seven months, Francis couldn’t be moved further than a few feet from her cot, and never left the hospital. She had a permanent low-level suction via a tube inserted in her oesophageal pouch, draining away her saliva and secretions that would have caused her to aspirate. During this time, she was also diagnosed with tracheomalacia – a significant floppiness of the trachea – following an acute life-threatening episode where she had to be resuscitated. After what seemed like a lifetime of waiting, we were eventually transferred to Great Ormond Street Hospital where she underwent her second major surgery to re-join her oesophagus to her stomach.
After 199 days in hospital, we finally got to take our little baby home to Jersey in July 2018.
Francis is now 15 months old and is cared for at home by my husband Stephen – and they share a fierce devotion for one another. We have to return to GOSH every six weeks for treatment, and she still has ongoing issues with her feeding, breathing, and speech. On one terrifying occasion, she stopped breathing and Stephen had to resuscitate her. Luckily, she bounced back and will never remember the trauma, unlike us.
Despite spending her first part of life in hospital, Francis is such a joy. She rarely cries, she always giggles and she’s incredibly curious. She was so used to an ever-shifting array of doctors and nurses that she loves seeing new faces!
She’s only just found her voice and now knows how to make herself heard – we’re excited to see what her first words will be! She loves music, which we attribute to the months of playlists being sung to her in hospital, accompanied with awkward ‘dancing’ that involved me carefully swaying her without dislodging any of her tubes or cables.
We still have a long road ahead, but we hope that all the interventions and procedures will help to minimise the impact of her condition. She will never have the normal ability to swallow, but we hope she can overcome this, just like she has with everything else!
For now, we are delighting in watching her grow into a lovely, cheeky girl. She’s achieving things that we thought seemed impossible at the time, like sitting in a high chair in public, swimming and playing on a swing… Our months in hospital were so restricted, but now that means every development is a celebration, no matter how small or big, and we don’t take anything for granted.