I would firstly like to introduce our family and give you a bit of background information. We are Hannah & Ian Twitchett, we have a 6-year-old daughter called Evelyn, and Penny, who is 2.
In July 2016 I fell pregnant with our second child. Unfortunately, after 12 weeks of pregnancy I suffered a miscarriage on October 19th, Evelyn’s third birthday. While this was an incredibly painful experience, we decided that we were keen to conceive again after the trauma had passed. I fell pregnant again in February of the following year. When it came to the dating scan, we both entered the room feeling very apprehensive, as the last time I was scanned there was no sign of life. To our utter surprise, two babies appeared as clear as day on the screen in front of us. We were expecting identical twins, who were later revealed to be girls.
We decided to call them Pippa and Penelope.
In twin pregnancies, the mother is scanned much more frequently as there are so many potential complications, particularly where identical twins are involved. It soon became clear that my placenta wasn’t working as efficiently as it should be and the blood flow to Pippa was poor. This meant that both girls were measuring very small for their gestation, more so with Pippa. The goal was for us to get to 24 weeks, and for each twin to weigh 500g. This is what is considered a “survivable” age and gestation. I was soon scanned weekly, then twice a week, and as soon as both girls hit 500g we were at the hospital daily, so that the blood flow to the girls could be closely monitored. After a long and agonising wait, it was decided that the girls would be delivered at 30 weeks, as they could be better cared for by the neonatal team. Unfortunately, there were no cot spaces free at Leeds General Infirmary, so our girls had to be delivered in Sheffield. On August 15th 2017, Pippa and Penny were born by C Section, weighing a tiny 726g (1lb 9oz) and 977g (2lb 2oz) respectively.
In Sheffield, they were cared for by the team at the Jessop wing, who were phenomenal. We quickly learned what all the wires and tubes did, what medications the girls needed and what all the beeps and alarms meant. The girls were both born in relatively good condition, and while it seems odd to say this about tiny babies who are hooked up to drips and monitors, our neonatal journey was pretty much smooth sailing. We experienced a couple of bumps in the road along the way, Pippa actually turned blue at one point when her oxygen saturation plummeted, but things could certainly have been a lot worse. While the staff here were amazing, we longed to be closer to home. After 4 weeks, St James University Hospital in Leeds had space for us, and the girls were stable enough to be moved, so we got one step closer to home.
Jimmy’s was our home for the next 4 weeks, while the girls got bigger and learned to breathe without oxygen support. Finally, by 11th October, the girls were big enough and well enough for us to have them both home. Pippa was still so tiny, she weighed 1.48kg (3lb 4oz) on discharge, we were told this made her the smallest baby to be discharged to community care in the area. Our family was finally at home as one.
Unfortunately, after just 8 days at home, Pippa became suddenly very ill, and on 19th October (Evelyn’s 4th birthday) we had to rush her into A&E at LGI. She had become incredibly pale and was taking very shallow breaths. We were immediately rushed through to resuscitation, where she was intubated and hooked up to a ventilator, given antibiotics and antiviral medication and an emergency blood transfusion. The room filled around us with roughly 20 nurses and consultants of various specialties. No one could immediately figure out what was wrong with her or which team should care for her. The paediatric doctors thought that she was too small to be cared for properly by their nursing teams, so she had to be readmitted to neonatal. This is something that just doesn’t happen. Neonatal wards are completely sterile environments, so admitting a baby who has been exposed to the outside world is normally not allowed, but due to her tiny size, they were the only team really qualified to care for her.
The next few days are something of a blur. Pippa was attached to 11 different medications through IV drips, which included antibiotics, nutrition, painkillers, diuretics and sedation. She remained ventilated as she couldn’t breathe on her own. We eventually found out that she had two viruses in her system, Cytomegalovirus (CMV) and Enterovirus, both of which had attacked her liver. She was suffering from acute liver failure, her best chance of recovery was to receive a liver transplant, but this wouldn’t even be considered until she weighed a minimum of 4kg, and even then her chances of survival would only be 30-40%. We were told it was a waiting game, her liver could recover by itself, but she needed to gain weight in order for that to happen.
Over the coming weeks, we experienced the most sickening emotional rollercoaster, she came off the ventilator after almost 2 weeks, but that didn’t mean we were out of the woods. Some days Pippa would seem content and be making improvements, other days she be lifeless and her oxygen requirements would increase. She contracted infection after infection as her immune system had been so badly compromised. She regularly needed blood transfusions, or blood products as her liver just couldn’t filter her blood properly. On last count she had at least 15 blood transfusion, 12 platelet transfusions, and around 10 transfusions of Cryoprecipitate, Fresh Frozen Plasma, and Albumin.
Christmas came and went, we tried our best to keep it as normal as possible for Evelyn, especially considering that her last 2 birthdays had been a disaster. A few days after Christmas, Evelyn was at her grandparents so Ian and I could have a solid day with the twins at the hospital. As we arrived, Pippa looked to be working really hard with her breathing and was clearly having a hard time. Within the space of 5 hours she’d gone from looking agitated and unsettled, to extremely poorly and needing lots of extra support. She was struggling to breathe, and we were told that her fight was coming to an end. Her little body wasn’t strong enough to go on. We called our family and asked them to come to the hospital so they could say their goodbyes. The hospital had arranged for Pippa to be moved in to a much larger side room, so we could have space for our relatives to come and see Pippa. Lots of the neonatal nurses who had spent so much time caring for Pippa came to see her too. It was such an emotional time for us, and it was particularly difficult seeing the nurses who had worked so hard for Pippa getting upset too.
Arrangements were made for Pippa to be transferred to a children’s hospice so we could make her final moments as relaxing as possible. Our parents were there waiting for us when we arrived with Pippa. Each had a few moments being able to hold her, before her being passed to myself and Ian. Pippa slowly drifted away in our arms.
Pippa passed away on December 30th 2017 at just 4 and half months old.
Leeds United Kingdom