"My advice to anyone else in my position considering pregnancy and birth is to consult with your consultant!  Have all those important discussions regarding infant and personal safety."

For many girls growing up with a liver condition, the thought of a future pregnancy is something which can be a worry. So, we’re very grateful to Catherine for sharing her story with us here.

I was born with Biliary Atresia and in 1998, after a failed Kasai procedure, had a transplant. I was later diagnosed with de nova autoimmune hepatitis.

I always knew that I wanted to have children but when I was younger, I did have concerns that my liver health issues would cause problems with a future pregnancy. I thought that as I’d been through liver transplant and had de nova autoimmune hepatitis that my body wouldn’t be able to cope with a baby. When I asked about this as a teenager, I was told any pregnancy could have associated risks.

So when I met my partner and we knew we wanted to have a child, it was something I discussed with my liver team in Birmingham. I had a consultation about the personal safety and possibility of safely carrying a baby to full term, and the potential risks associated. This involved a serious discussions of all possibilities, including miscarriage and preterm birth and its associated risks as well as potential issues with the liver itself. I know that sounds a bit scary, but I am someone who likes to know all the facts.

I have been blessed with stable liver health for a long time, my transplant had been 25 years previously, so we decided to go ahead. Once my pregnancy was confirmed, my care was largely local (in Wales where I live) but with input from Birmingham’s Queen Elizabeth’s Hospital.

As you might expect, my care differed from standard antenatal care. I had all the routine appointments plus additional consultations to discuss the safety of vaginal delivery vs Caesarian section and more blood tests for my liver. I also had monthly growth scans, one liver scan which took place in Birmingham, and I was prescribed an extra medication.  Again, it was the Birmingham team who advised my local midwifery team about this. Throughout my pregnancy, I was very healthy with my liver bloods only slightly fluctuating. My baby was growing well, and I was set for a vaginal delivery in hospital.

As for myself, I felt nervous but also grateful and excited. One aspect which did worry me was the psychosis which I developed in 2020. It was all under control, but I knew that with pregnancy there was a 50:50 chance of a recurrence. Sure enough, it did pop up again right at the end of my pregnancy, but it was managed with medications, a nurse and psychologist and I’ve been well since.

Despite my good health, as I got nearer my due date, the baby stopped moving for prolonged periods of time, so I was induced a few days early. The induction failed so I immediately had a Caesarian section, and we welcomed our perfect and healthy daughter, Safiyyah, into the world in September 2024, appropriately enough during Organ Donation Week!

I was then in the high dependency unit after the birth with a steroid infusion. This was to ensure my body had enough steroid remaining for my liver during childbirth. However, I only stayed in for monitoring a couple of days longer than an average person. I was discharged after three days, and I had the standard week of injections after the Caesarian for blood clotting.

Safiyyah is now two years old and doing great. She loves dinosaurs, dolls and bubbles. Since having Safi, my life has been an adventure –  motherhood is lovely, tough and fun all in one!

Unfortunately I am no longer with my partner so as a single mum, I have a busy life. I work part time in a remote role as well as taking care of Safi. I would like to restart my PhD in Public Policy soon, so I’ll be extra busy! I am able to maintain a good work/life balance by accepting that not everything can be done everyday, and having help from family and friends whenever needed. I have had to learn that asking for help and balance are essential!

My health is generally stable although since I’ve given birth my blood results have shown a mild elevation of liver disease. This is likely due to a variety of factors including being autoimmune and my weight gain. But I continue to see the liver consultants and have blood tests regularly, and I have a scan booked shortly.

My advice to anyone else in my position considering pregnancy and birth is to consult with your consultant!  Have all those important discussions regarding infant and personal safety. Everyone’s liver condition and transplant is a different situation. We all have our own journey to follow, live your life as you dream.

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