My daughter, Violet, was diagnosed with Left Sided Congenital Diaphragmatic Hernia (LDCH or CDH) during my 20-week scan. This occurs when the diaphragm does not close the correct way during the baby’s development and their abdominal organs push through into the chest cavity. With her internal organs being so far up they had even pushed Violet’s heart towards the wrong side of her chest. The sonographer showed us where everything should be compared to where it actually was, which was extremely worrying. We were referred to the Royal Victoria Infirmary (RVI) in Newcastle so that Violet could be examined by their specialists. Two days later we had another scan at the RVI which confirmed the diagnosis, but also detected that Violet had a small hole in her heart as well.
We were given three options for how we wanted to proceed. We could do more tests such as amniocentesis and MRI to detect any other conditions Violet might have, which could lead to her needing foetal surgery in London. Closely monitor Violet’s development with regular scans and hope for the best or terminate the pregnancy. We decided to do an amniocentesis to see if she had any other genetic abnormalities, but it only came back with the CDH. The consultant spoke with the London team and they determined it wasn’t necessary for Violet to undergo foetal surgery or an MRI based on the results. We continued to have regular scans at the RVI and planned for me to be induced at 39 weeks so the team could be prepared for her arrival and immediate care.
“Crawford and Scott Houses helped us so much. Being just a short walk away from the hospital we could easily get back to Violet’s side whenever she needed us.”
However, I went into spontaneous labour at 37 weeks which progressed very quickly, with Violet being born at Darlington Memorial Hospital. All the neonatal team and transfer team were in and out of the labour room as they waited on standby, with up to 15 people in the room when she was born. Violet was immediately intubated and two hours later my partner, Brad, and I were allowed to go and meet our daughter. It was incredible to see her but after just 20 minutes she was transferred to the RVI. We weren’t allowed to go with her in the ambulance so quickly made our own way there. On top of everything that Violet was going through we now had the additional worry that she would be treated an hour away from our home in County Durham for an indefinite amount of time. Thankfully during my antenatal appointment at the RVI, we heard about Crawford House, a ‘Home from Home’ run by The Sick Children’s Trust which supports parents with children on the intensive care units with a place to stay, completely free of charge. Knowing that Crawford House was there to support us was very reassuring.
At 17 hours old Violet was having difficulty breathing and needed to be placed onto an ECMO machine, which took over delivering oxygen into her blood. She was transferred across Newcastle to the Freeman Hospital so she could receive assistance from machine before having surgery at five days old to adjust her the position of her internal organs and an artificial patch to act as her diaphragm. Ideally, she wouldn’t have been connected to the ECMO machine during the procedure because of the amount of blood thinners she was on, preventing clots in the plastic tubes. This carried greater risk, but she couldn’t wait any longer. While the operation went well, the surgeons had to leave some of her bowel outside her abdomen as there currently wasn’t enough space for all her internal organs. She also needed two chest drains after the surgery due to the build up of air and fluids in her chest, which was crushing her heart and lungs.
After seven days on the ECMO there was an emergency, with huge blood clots building next to the cannula that put blood back into her body. With this being a big stroke risk, Violet was taken off the machine. The doctors thought this would only be temporary, but thankfully she was managing well without it. She then had surgery to completely close her abdomen. Throughout Violet’s time at the Freeman Hospital, The Sick Children’s Trust supported us at another of its ‘Homes from Home’, Scott House. With all the charity’s ‘Homes from Home’ being very similar it gave us great comfort to stay somewhere that felt so familiar. We had a comfortable room to get some rest, communal kitchen to make proper meals and support from their wonderful staff. It helped us to look after ourselves so we could help look after Violet.
After three weeks at the Freeman Hospital Violet was transferred back to the RVI for the rest of her recovery, while we moved back to Crawford House so we could always be by her side. It helped us so much being just a short walk away from the hospital as we could easily get back to Violet’s side whenever she needed us. Our eldest daughter Sienna, who was two at the time, was able to visit and stay with us at both ‘Homes from Home’, which kept us together as a family as much as possible. If we didn’t have Scott and Crawford Houses, we probably would have had to stay at home, which is at least an hour away. That’s just too far away when your baby is so critically ill.
At the start of December Violet was moved the from neonatal intensive care unit (NICU) to high dependency, slowly being weaned off breathing support and tube fed. However, a chest x-ray on the 12th December showed she had herniated again due to a hole developing in the artificial patch, with her stomach moving back into her chest. We were hopeful that she would be home in time for Christmas, but this discovery left us devastated. She had emergency surgery the following day and was once again intubated. Luckily it wasn’t for as long this time, with Violet feeding better both by tube and orally while only needing a small amount of support from a low flow oxygen machine. On Christmas eve we slept at home so we could wake up with Sienna and spend some time with her. I rang the NICU on Christmas morning who said Violet had been moved back to high dependency overnight, which was encouraging news. We had Christmas lunch as a family at home, even though we had a piece of us missing, and toasted to Violet being home soon. We then made our way over to see Violet and spent the rest of the day on the ward. While it was lovely to be with her, the Christmas period was a very difficult time.
Since recovering and coming home Violet is now oxygen free and has been since July. With the hole in her heart closing, she is also off her heart medications and is doing well. We’re hopeful she won’t need any further surgeries or hospital stays, but we know the artificial patch can fail at any time, which would mean invasive surgery again. We’re just hoping it doesn’t come to that.
Christmas this year will be filled with so much happiness. Last year I felt detached from myself and everything that was happening around me, I just felt numb. Even though Violet will not remember having her first Christmas in hospital we will remember the feeling of emptiness sitting around the table without her. We’re incredibly grateful to everyone who has helped make sure Violet will be with us this year and we’re looking forward to our big family Christmas.
Courtney Scaife, Violet’s mum.
