My husband Daniel has had both brain and testicular cancer, and has been treated with surgery, radiation and chemotherapy. Due to his illnesses and treatment, we had been told for many years that, without significant medical intervention, the chances of us having children were very slim. You can only imagine our initial surprise and shock, and then joy, when we fell naturally pregnant in June 2018.
Sadly, at 15 weeks and 3 days’ gestation, my waters broke at 5.20am on 11 October 2018. I rang the Maternity unit and was advised that, due to my gestation, I needed to initially attend the Emergency Department (ED) rather than Maternity. I was admitted to the ED at approximately 7am.
We were initially advised that surgery would be required to remove “the products of conception”; language that did not resonate at all. We were having a baby, not a product. I replied that I did not want to have surgery; that I wished to give birth naturally so that our baby could be as perfect as possible, and we could spend time with him. The initial ED response was that the Obstetric/Gynaecology doctors would need to decide. Thankfully, the Obstetrics doctors were supportive of our decision, and medication was commenced to induce labour at approximately 1.30pm. I was still in the ED.
Our grief at losing our precious son was compounded by the prospect of giving birth in the ED. This was our first baby; we had not yet had the chance to attend birthing classes, but we knew that giving birth with a curtain between us and the rest of the busy ED was not optimal. Thankfully we had a dear friend and retired midwife who arrived at approximately 6pm and was able to successfully advocate for us about our strong desire to leave the ED in order to birth our baby away from what is effectively a public and very busy space.
However, it was only after our friend spoke to the ED Nursing Unit Manager that a bed was found for me. If we had been on our own, I have little doubt that I would have given birth in the ED, surrounded by patients experiencing trauma and suffering.
At approximately 8pm, a bed was found for me on the Surgical ward. Thankfully this was a private room where we were able to cocoon ourselves as I progressed through labour. The ward was attended by medical staff who had little (if any) experience with a labouring woman. The general nursing care we received from the nurse on duty was excellent, and she went out of her way to ensure we were well looked after; we are very thankful. However, I was not seen by a midwife or obstetrician from the hospital whilst I was in labour.
At the stroke of midnight, our beautiful son Charlie was born. A midwife attended after his birth and lovingly took care of Charlie, taking prints of his hands and feet for us, and wrapping him in an Angel Gown. Our hearts were broken, but the chance to spend some precious hours with Charlie definitely helped us to process our loss and to gain a sense of peace.
We were fortunate to have a friend who is a funeral director and who could assist us to make arrangements for Charlie. We explored this on our own, as there was no information provided to us about what we could or could not do. We weren’t even sure if a cremation could be held for such a small baby, but we have since learned that it is possible to have a funeral for a baby of any gestation, and that the funeral companies often do not charge grieving families. We are so grateful for this, and for the care and kindness we received. We hope that all grieving families can be made aware of these possibilities.
Since losing Charlie, we have heard from hundreds of people who have been in similar situations. All have spoken of some degree of a lack of autonomy or control, or even a lack of kindness in their experiences. Some women have miscarried on their bathroom floor, covered in blood, not knowing where to go or what to do after receiving minimal assistance on the phone from the Maternity unit. Some have experienced a lack of kindness from medical staff in EDs or similar, insisting on open curtains around the bed when a woman is labouring and grieving at the same time. Families have had their babies returned to them in specimen jars – medically appropriate, but not emotionally appropriate. Some have flushed their miscarried baby down the toilet because they did not know what else to do. Others felt like their babies were unimportant once they had been delivered, and that they were not able to spend the time they wanted with their babies because they felt pressured by medical staff to leave the hospital.
Once we knew we could fall pregnant naturally, we tried again. Sadly, on 11 July 2019, I gave birth to our daughter Sophia at 16 weeks and 6 days’ gestation.
Sophia’s birth was a greatly different experience – we were cared for in a room within the birth suite that was prioritised for bereaved families. A highly-skilled midwife cared for us, guiding and supporting us through saying both hello and goodbye to our beautiful daughter. Sophia stayed beside me in a cooling cot, meaning I could cherish her for longer than I had with Charlie.
However, as we left the hospital without our baby girl, we had to walk the length of the birth suite corridors, passing rooms where you could hear baby heartbeats on CTG monitors, or the cry of a newborn. I nearly physically collapsed from the weight of our loss as it was compounded by those joyful sounds.
My determination to call for a unit dedicated to pregnancy complications and pregnancy loss grew stronger after this experience – no family should have to hear the sounds of celebration when they are mired in the deepest grief.
Despite our grief, we can acknowledge that ours is also a positive story; we had the chance to birth our babies and to be with them, and to make memories with them even though they were already deceased. We had someone with us who knew what to do and how to guide us, and to advocate for us. We were able to formally say goodbye to our little babies, and now have their ashes at home. We are able to look back and say that we had some control in imperfect situations.
Women and their families need to know there is somewhere they can go within each hospital where they will receive the care and support they require during a time that is emotionally, physically and mentally demanding. This care and support needs to be consistent in delivery, so that families can be assured of a dignified and comforting experience during any form of pregnancy loss. This is my aim for all families who so sadly experience pregnancy loss.
Karen Schlage 