A Story of The Royal
The Department of Maternal Fetal Medicine (MFM) at The Royal Hospital for Women provides an integrated multidisciplinary service for women experiencing a “high risk” pregnancy. Women or their unborn baby who have existing or potential high-risk medical concerns are referred to MFM from all around NSW.
One patient who has been deeply impacted by the work of The Royal’s MFM team is Claudine Fitzgibbon, who was under the care of the team of MFM specialists for over seven years during the most challenging time in her and her husband Dave’s lives.
“The Royal has cared for our family throughout all five of my pregnancies. The MFM department looked after us through four of those pregnancies and over the course of seven years, our family received exceptional care from many of the doctors, nurses and midwives at this wonderful institution.
After a very straightforward and beautiful first pregnancy and birth, being cared for by The Royal’s midwifery group practice, Dave and I welcomed our daughter Eliza in April 2013. The pregnancy and birth had been a very positive experience for us, so when I fell pregnant again in 2014, we were very happy to place ourselves in the care of The Royal midwives again. Very sadly, the next twelve months in our family’s life was one of significant grief and loss.
In October 2014, after my 20-week scan for my second pregnancy, Dave and I were referred to the Maternal Fetal Medicine team at The Royal, who told us that our baby had spina bifida. This came as an incredible shock, and we were faced with a terrible decision.
Spina bifida is a complex condition affecting around 1 in 1000 pregnancies per year, and while some people can thrive with the condition there are many others who suffer with physical and cognitive problems, multiple surgeries, issues associated with hydrocephalus as well as physical discomfort related to paralysis, nerve damage and bowel and bladder complications.
There is a broad spectrum of outcomes, which can require continual and significant medical intervention. Looking at our baby at 20 weeks gestation, no one could tell us where she would fall on this spectrum.
The diagnosis was followed by an agonising week of sleepless nights and many hours of researching by Dave and I, as we eventually reached a painful decision to discontinue the pregnancy. Our baby, Sophie, was born on the 3rd of November 2014 at The Royal. Leaving our baby girl behind when we left the hospital the following day was almost unbearable. I will never be able to fully express my gratitude for the support, compassion and wisdom of Kate Dyer, Maternal Fetal Medicine’s clinical midwife consultant, who helped us navigate our way through that time.
We were advised that spina bifida has multifactorial causes, including genetic, but if I took high dose folate it was very unlikely that another pregnancy would be affected. I fell pregnant again in 2015 and unbelievably, Dave and I found ourselves back in the hands of the MFM team, faced with an almost identical diagnosis at the 20-week scan. The emotional strain and shock of being confronted with the same situation was really devastating. After seeking multiple medical opinions, we again made the heartbreaking decision to discontinue the pregnancy. Our daughter Willow was delivered on the 28th of August 2015. Making the decision to give up another baby almost broke me. The trauma, uncertainty and pressure of being responsible for those decisions never leaves you.
In July 2016, during our fourth pregnancy and back in the care of Dr Antonia Shand from MFM, at a 16-week scan we were told, that this baby, a boy this time, also had spina bifida. It was almost too much.
I knew I couldn’t make the decision to give up another baby. It was harrowing to have made the decision for Willow, so I knew the pregnancy was going ahead, I just didn’t know what that meant for our baby. After the scan we sat in a room with Dr Shand and I just said, “tell me there’s something new.”
Dr Shand told us that her colleague in Brisbane was doing the first spina bifida in-utero surgery in Australia in a couple of weeks. So I said, ‘well we’re going to Brisbane’.
It felt like providence. We were finally having this longed for baby and also being offered a chance to do something that felt pro-active and which could make a real difference to our son’s life. We proceeded with the surgery in the care of Dr Glen Gardener, at the Mater Mother’s Hospital in Brisbane at 24 weeks pregnant.
Perhaps one of the most reassuring things about that experience and something I am always grateful for, was to have Dr Antonia Shand and Kate Dyer in the operating theatre with me, as they had flown up to observe the surgery, and to see their faces just as I was being put under anaesthetic. We returned to Sydney three weeks after the surgery and although Harvey was due to be delivered at 37 weeks, he was delivered by The Royal’s Dr Danny Challis by emergency caesarean, 4 weeks earlier than we had planned on the 31st of Oct 2016. He spent almost 4 weeks in the Newborn Care Centre, which provided yet another experience of exceptional care at The Royal for our family.
For Harvey, the fetal surgery surpassed our expectations, and it is amazing that he hasn’t required any interventions for any complications. He is almost five and is a cheerful, inquisitive and active boy, who loves sport and playing with his sisters.
Despite always wanting to have three or four children, given the challenges we had faced, we had unofficially called it a day on having anymore after Harvey. Therefore, my fifth pregnancy came as a bit of a shock.
After the initial few months of the pregnancy, when the health of our baby had been established, our attention was turned to the fact that the birth was now the main concern. Given the uterine scarring from Harvey’s fetal surgery, uterine rupture was a possibility, so I was scheduled for a caesarean at 37 weeks. Unfortunately, the uterine rupture became a reality and Genevieve arrived under quite stressful circumstances, delivered by Dr Andrew Bisits in the middle of the night. Once again, Kate Dyer also appeared by our side, to calm us and support us, and again I don’t think I can find the words to describe what it meant to me to have her with us.
When I look at our children, I feel overwhelmingly grateful to so many people from The Royal.
Dave and I chose to share our story because we think it exemplifies the extraordinary work that the staff there carry out, particularly those who cared for us throughout the most traumatic days that we experienced as a couple. Not in a million years could we have imagined what our journey to create a family would look like, and I could never have believed that I would make some of the decisions that I did. The MFM team helped us navigate our way through very difficult circumstances with compassion and respect and I know they have done this for many, many other families.
We probably had a longer relationship with the MFM team than I would have liked, given that they are the team that you have to see when there are problems in your pregnancies, but they supported us every step of the way throughout four of our five pregnancies and we are acutely aware that their dedication and expertise saved my life and shaped the family we have today.”
