"Our experience with the birth and death of our son."

The following is the story of our son John Paul, who passed away shortly after his birth in April 2018. We have written this story to highlight the incredible people at University Hospital Lewisham who worked with us throughout his journey, as they deserve praise and recognition for the care they provided above and beyond their call of duty.

At our 12-week ultrasound, we learned that our son John Paul "JP" had many severe anomalies and would not survive after birth if the pregnancy continued on to full-term at all. Despite the shock we immediately felt, we were met with compassion and honesty through Sue - Specialist Fetal Medicine Midwife. As my husband and I both work in healthcare, we understood the gravity of JP’s diagnosis and knew that we now had the difficult choice to either terminate the pregnancy or carry on knowing our baby would not survive after birth. Sue calmly and clearly provided us with the facts of each choice, without a trace of bias or judgement. Two days later, we had a difficult appointment with a specialist that left us in a state of confusion and fear. We reached out to Sue who immediately had us come to the Fetal Medicine clinic that same afternoon to speak with herself and a consultant, Ms. Mehta. They both provided us with unbiased honesty about our options and continuously reminded us that the only correct decision was what we felt was best for us. They encouraged us to take time to think things through, as they recognised the ongoing emotional processing required before we could make a decision that we would be comfortable with in the long-term. 

We decided to continue the pregnancy in order to spend as much time as we could with JP, and were immediately given unlimited support. It was arranged that we would see the same staff members at each appointment, for the comfort of familiar faces and not having to explain our story each time. We always saw either Mr. Sau or Ms. Mehta, along with Sue, and we left each appointment feeling well informed of the current situation, the plan going forward, and had all of our questions answered with patience and understanding. We were determined to celebrate our baby boy despite knowing the outcome, and we were so thankful that the team joined us with joy throughout the pregnancy. It would have been so easy for them to have met us with pity, but having their reactions match ours helped immensely.

As the pregnancy progressed, we experienced complications which required multiple hospital admissions. Ms. Mehta often oversaw our care during admissions, and we were so grateful for her input. Rather than blindly following a protocol that would require extended hospital stays, Ms. Mehta used her clinical judgement and looked at our situation holistically, understanding that with this unique pregnancy our mental health and quality of life was more important than strict adherence to protocols. Ms. Mehta had an open dialogue with us, understanding our concerns and trusting us. This was truly an example of patient-centred care that made such a difference to our overall well-being.

We have also been meeting with Sue, Women’s Health Counsellor, for regular visits throughout the pregnancy and after JP was born. Sue’s experience with other parents in similar situations has helped us endlessly, providing insights into coping strategies and the complicated grieving process. Seeing Sue as we travel though grief has been significantly beneficial, and we are so thankful for her listening ear and helpful guidance.

Last but certainly not least, we are incredibly grateful to Kelly - Bereavement Midwife, our never-ending advocate and companion throughout our journey. The hundreds of small things that she did helped us immensely- coordinating with the medical team to minimise emotionally difficult situations; ensuring privacy as seeing pregnant mothers or babies could be distressing; staying well past the end of her work day to help us settle in during admissions. Kelly acknowledged and shared in the joy we felt at finally getting to meet our sweet boy, as well as the overwhelming sadness that our time with him was so limited. She helped us create priceless memories- providing a cooling cot to prolong our time with JP, clothes and blankets to lovingly dress and hold him in, the SiMBA memory box, creating handprints and footprints, and allowing us to take him to Ladywell Fields. Being able to take JP out of the medical environment to the park was a highlight of our time with him, giving us a beautiful spot that we can still go to and remember holding our son. Kelly also helped with the logistics after JP’s birth, gently guiding us through the necessary paperwork and registration process. She acknowledged that handing JP over to the mortuary would be incredibly difficult and allowed us to choose when we were ready to do so. After we returned home, Kelly came to visit and also attended JP’s funeral, both of which helped tie together the experience between hospital and home. Kelly was truly an angel by our side, and we could not have asked for a better confidant and friend.

We are now 5 months since JP’s birth, and coping miraculously well considering the great loss we’ve suffered. There is no doubt that because of the care we received we are able to celebrate this journey with so much love and joy. Although JP’s life was short, he never knew anything but compassion and kindness from all those around him, and we are so grateful. We hope that University Hospital Lewisham- and especially those we specifically mentioned above- are given the recognition they deserve.