Losing a baby: Aly, Vic and Evelyn’s Story

On 23^rd January, my husband, Aly, and I arrived at St Mary’s for my 13^th scan. By now, as you can imagine, we were fully aware that things were not going smoothly, and we were preparing to have an amniocentesis after the scan. We already knew that the baby’s heart was on the wrong side and that there was only one kidney. The obstetrician came into the room with some unexpected news; I was to be admitted to St Mary’s immediately and my baby would be born in on 25^th January, within week 32 of my pregnancy, by caesarean section. I had my first, of two, steroid injections before I was taken up to the maternity wards to speed up the development of my baby’s lungs ready for arrival.

On 25^th January, after a successful procedure, I was presented with my baby girl. She was beautiful, and we had had a few names lined up, but she was an Evelyn, without a doubt. I got to take a quick look at her before she was taken down to NICU and I was taken to recovery. As soon as I had feeling back in my limbs, Aly wheeled me down to NICU to see her. She was so incredibly tiny, with so many tubes and monitors on her. It was so frightening and overwhelming, but the love I felt for her was immense. The consultant came to see us to explain that Evelyn had tracheo-oesophageal fistula (TOF), which meant that her oesophagus had not detached from her trachea in the womb and an urgent operation would be required to fix this defect. She was booked in for the operation on Monday morning. I was so scared. How could such a tiny baby cope with surgery? It became apparent, very quickly, just how strong and feisty this little lady was.

It was on Saturday that the nurse asked us if we lived far from St Mary’s. It had not yet occurred to me what we would do once I was discharged as there was no way I was going home. We lived at least 30 to 40 minutes away without traffic. This was when we were first told they could refer us to Ronald McDonald House to stay, but, in the meantime, we would stay in one of NICU’s rooms until Evelyn had had her operation. I remember the night before her operation starting to shake uncontrollably, I was terrified.

The next day we had a cuddle before she was taken down to theatre. We sat in our room in NICU trying to distract ourselves when there was a knock on the door. Evelyn’s surgeons were there after only an hour. There had been a complication. Not only was Evelyn a ‘TOF’, but her right lung had grown from her oesophagus and not her trachea. This had only ever been seen once before, in the entire UK, in at least the last ten years. It was incredibly rare. The other case had in fact been only six months earlier in Manchester and Evelyn’s surgeon had operated in that case and advised us that the best course of action would be to remove the lung. We consented to this and, after five hours of surgery, Evelyn was back in NICU, doing well.

After a few nights in NICU’s rooms we eventually were told that there was another family that needed our room. We would have to leave, but we were yet to hear from Ronald McDonald House that we had a room. We were incredibly lucky that on that very same day, just a couple of hours later, we received our phone call to say we had a room. I was so relieved, the worry of where we would stay was now a weight off our shoulders. I was not prepared to leave the hospital campus. The only concern I now had was Evelyn and spending every minute I could by her side.

Stepping into the Manchester House that day I was so overwhelmed. I remember being greeted by the friendly staff at the desk and given a tour of where all the facilities were and how everything worked. I was shown to our room and my parents helped us move in. The room was lovely, so bright and comfortable. The kitchens and dining areas were functional with our very own cupboard, fridge and freezer compartments. Most importantly of all, however, was that I was just a few minutes away from Evelyn’s side. This became our home for the next 14 weeks. Every morning I would greet the staff on reception and they always had a warm smile and kind words of support for us.

Heartbreakingly, Evelyn’s one lung was not able to sustain her. She developed pulmonary hypertension and eventually succumbed to an infection that she could no longer fight. We knew she had had enough of fighting and it was time to say goodbye. Evelyn passed away in the early hours of 10^th May 2019 in our arms.

I remember the day after Evelyn passed away speaking to the staff on the reception desk to advise them that we would be moving out that day. There was a lovely lady, called Kate, who took me for a brew and sat and let me cry. She was there for me that day and I will never forget her face and her kindness. We were told that we could stay longer if we wanted to be close to Evelyn’s body and we were so appreciative of that offer.

One special moment was Valentine’s Day. I was expressing milk in the night so would have to take it to the fridge in the early hours. I opened the door to find a Valentine’s card and gift on the floor outside our door. I could not believe it, such a thoughtful gesture and it made me smile so much.

I would encourage people to support Ronald McDonald Houses as you never know if your family or a friend’s family, might need their support. It is such a comfort to know they are there, looking after families so that they can focus on their child in hospital. To not have to worry about getting through traffic, finding a parking space in a busy hospital car park, is so valuable. We received several frightening calls when Evelyn had moments of deterioration. Can you imagine if you received a call saying your child is fighting for their life and it takes you over an hour to get to the hospital as it is rush hour? It is not something I had to contemplate, and I am forever grateful for that. What Ronald McDonald House gave us was time with Evelyn, which was the most precious gift we could have been given. Thank you.