As a Doula it is always hard to imagine the unimaginable. To guide parents through this incredible journey through pregnancy and birth with all its excitement, obstacles, exhilaration, and then that moment…the moment every mum and dad eagerly await, the meeting with the love of their lives. That moment where a mum can hear her baby’s heartbeat for the first time outside of her own body, where they are separated in body but they are still one. For some this moment is accompanied by love and deep heart ache as the baby they have come to have this unconditional love for is born a sleeping angel.
“Every day, six babies will die in their mother’s womb and be stillborn – a little-known and tragic health issue” (Stillbirth Foundation). For the mums and dads that go through this unimaginable loss it takes great strength, support and love to triumph and keep their angel in their hearts and go on to have a rainbow baby. “A “rainbow baby” is a baby that is born following a miscarriage, stillbirth, neonatal death or infant loss. In the real world, a beautiful and bright rainbow follows a storm and gives hope of things getting better. The rainbow is more appreciated having just experienced the storm in comparison. The storm (pregnancy loss) has already happened and nothing can change that experience. Storm-clouds might still be overhead as the family continue to cope with the loss, but something colourful and bright has emerged from the darkness and misery.” (Kicks Count)
I want to share with you Joanne’s story with you. Joanne is a mother of 3 children, one of whom is Rocco a very special little boy that was born into her arms sleeping. Joanne is sharing her story in her own words in the hopes to shed some hope and light for families going through this so that they can read her words and begin to heal in their own way.
We had never managed to hold on to a pregnancy beyond 9 weeks previously. Early dating scans didn’t give us any reassurance anymore, either, as we had seen good, strong heartbeats with all of our pregnancies. We were very emotional at reaching 12 weeks with Rocco – overjoyed to have gotten past the early weeks when things had gone wrong previously, but extremely worried that there would not be a heartbeat at our 12 week scan. We were still devastated when it became clear during the scan that something was wrong. The nuchal translucency was thicker than it should have been, and there was also something wrong – it was unclear what – with the baby’s abdomen. Our sonographer was extremely experienced, in fact the Chairman of the Sonographer’s association of Australia, yet he had never seen anything like it. His best guess was that our baby had Down Syndrome, and possibly Gastroschisis, which is a defect of the abdominal wall whereby the intestines (and sometimes other organs) protrude through a hole next to the belly button. Although Gastroschisis sounds scary, the prognosis is relatively good, so our main concern was the nuchal translucency. The only way to get a definitive answer on Down Syndrome was to either have an immediate CVS, that carried a 1-2% risk of miscarriage, or waiting for another month and having an amniocentesis, which carried less than a 1% risk of miscarriage. Paul and I decided that we needed answers, but couldn’t risk the pregnancy any more than absolutely necessary, and so decided to wait for an amniocentesis. Of course, the next month was a rollercoaster of emotions. On the one hand, we were worried sick about the outcome of the test, but still had a pregnancy that was seemingly progressing well.
Of course, once we had the amnio, it was an agonising wait for the results. 24 hours later, we were told that our baby did not have Down Syndrome, and all other test results were clear also. BUT, we still needed further investigation, as clearly something was significantly wrong. The doctor we were referred to was the head of the Maternal Fetal Medicine Unit and Ultrasound Department at King Edward Memorial hospital. She has a special interest in prenatal diagnosis, and was able to tell us that our baby had fetal hydrops – a serious condition that means that fluid accumulates in baby’s body. In our case, the condition was so severe that there was little hope that our baby would reach full term, let alone survive for any length of time after birth. The longer the pregnancy progressed, the bigger the risk to me, and the advice we received was to end the pregnancy as soon as possible in order to alleviate that risk. Paul and I went home that afternoon and cried, and cried and cried.
A few days later, we arrived back at hospital to have our baby induced early, effectively terminating the pregnancy. At this stage, I was 20.5 weeks pregnant. It was explained to us that our baby was very sick, and would likely not survive the birthing process, however, there was a small possibility that he may take a few breaths before passing. After a few hours of labouring, our baby was born asleep. I can’t even begin to describe the sorrow. He weighted just over 1kg, and was perfectly formed. He looked just like he was peacefully sleeping. We were allowed to spend hours and hours holding him. It was heartbreaking, but I’m so glad that we had that time together. It was gently explained to us that a post mortem would need to be carried out, to try and establish what caused the fetal hydrops, but that nothing would happen until we were ready. We were told that we could visit hospital over the next few days to spend time with Rocco, before our last good-bye, and we did. We visited, and spent such precious time with him, crying, and telling him how much we loved him. This time was so important to our grieving, and ultimately healing process. We needed to be ready to let go, knowing that after the post mortem Rocco would be cremated. Along with my children, his ashes are the most precious things I have.
Can you please tell us a little bit about your journey as a mother and your experience after losing your sleeping angel?
After having suffered four losses, it was a difficult decision for my husband and I to try for a baby a fifth time. Thank goodness we did, as this pregnancy was successful, and we were blessed with a perfectly healthy, little boy – Oliver. Of course, two becoming three is always a huge adjustment, but we were overwhelmed with feelings of disbelief. Disbelief that we actually had a baby. Constant worry that he was going to stop breathing in the night. On the one hand we felt so lucky to have been blessed with a child, on the other we felt it was too good to be true for us. This kind of happiness was for other people, not us. These feelings lasted months and months, and only really passed when Oliver became much more robust. Oliver is now 5, and we still appreciate every single second with him, which, I guess is the positive to come out of our experiences. We also now have a daughter, Emelia, and are very conscious of being ‘present’ parents, and filling our baby’s childhoods with as much love and laughter as possible.
Most women are reluctant to discuss this subject of stillbirth. When did you feel ready to open up and discuss this with family and friends without it feeling so raw?
Unlike my previous miscarriages, I felt everyone knew about my late term loss. Neighbours, work colleagues, acquaintances…. I was overflowing with grief, but incredibly aware that most people had no idea what to say to me. I am eternally grateful to the network of close friends and family who were happy just to let me cry in those early days. After around 12 months – and the arrival of Oliver – I was much more comfortable talking about Rocco, our sleeping angel. He’s part of our family, and I have no hesitation in speaking openly about him. In doing so, I have come across many other women – including two close friends – that have suffered losses also. It saddens me that stillbirth is still considered such a social taboo that I have friends that have also been through this experience, and I had no idea.
What was the lowest point for you that you can remember in your grieving process?
No person should have to leave hospital without a baby after having given birth. Leaving my baby behind broke me. I was in utter despair….. indescribable grief.
How did you and your husband react to this loss? What kind of an effect did it have on your marriage?
Rocco had a massive effect on us as a couple, but thankfully a positive one. My husband and I supported each other through the most traumatic period in our lives, despite our huge sense of grief. We share the loss of a desperately wanted child, but have a bond so strong as a result.
What did you find got you through your darkest moments in the grieving process?
It sounds dramatic, but I honestly don’t think I would have survived without my husband and my Mum. My Mum was amazing. She dropped everything, and flew half way around the world to be with us. Somehow she knew when to offer comfort, and when to leave us to grieve in peace. Of course, I had always loved my Mum, but didn’t realise until this point just quite how special she was. The midwives (and all the hospital staff) were also incredibly patient and understanding. Through the hospital’s Pastoral Care Service, we were able to arrange a funeral and blessing for Rocco, and lit candles of remembrance for him. They provided us with a memory box full of photographs and other mementos, that offered us great comfort as the time went by and still does now. Rocco needed a post mortem, but importantly, this wasn’t carried out until we were ready to say goodbye to him for the final time.
How did you come to the decision to have another baby and was that a difficult decision to come by?
The decision to have another baby was a relatively easy one. Both my husband and I were terrified of the prospect, but we desperately wanted to be parents. We knew we couldn’t continue to keep putting ourselves through this heartache, but at the same time, needed to know that we’d done all that we could before admitting defeat. We didn’t want to live our lives under a big cloud of ‘what if’. Once the decision was made, we wanted to try as quickly as possible – before logic, self-preservation or sanity kicked in. Thank goodness we did, as Oliver arrived within a year of Rocco.
Did you make different decisions in your subsequent pregnancies because of your loss?
Absolutely. I was lucky enough to be accepted by an obstetrician that specialised in high risk pregnancy and birth, and who understood my concerns. I had weekly scans to monitor baby and – more importantly – keep my anxiety levels in check by reassuring me that everything was going to plan. As it turns out, this was a textbook pregnancy, but I didn’t enjoy a single minute of it. There was a constant expectation that something would and could go wrong, and neither me nor my husband allowed ourselves any joy at the prospect of becoming parents. In some ways, it was even more difficult for my husband, as he wasn’t experiencing the pregnancy first hand. He didn’t have the comfort of feeling baby move or hiccup. The biggest difference with this pregnancy is that I chose an elective c-section – something I had never considered previously. No matter how much reassurance I received, I couldn’t face the idea of delivering ‘naturally’. There were too many sad memories attached to it. Also, I believed (and still do), that I wouldn’t have been able to cope with even the slightest complication, and would simply have had a mental breakdown.
Do you have any advice for newly bereaved parents so they can find solace in their darkest moments?
Share your burden. Communicate with your partner and close family. And cry. Cry until you can’t cry any more. Be selfish. Take as much time as you need to somewhat recover. You have to allow the grief process to take place, before you can be truly thankful for at least having the chance to have cuddled your angel.
It’s also very difficult for family and friends to know what to say or do in supporting grieving parents…do you have any words of advice on what you felt aided you or what support you needed from those closest to you?
I just needed my closest family and friends present. Simply asking how I was, and listening to my answer – good or bad – was enough for me. I was humbled by the outpouring of kindness from people. Our house was full of flowers and cards, and it was a comfort to know that everyone was thinking of us, even if they unable to find the words in person.
A loss at any point during a pregnancy is still a loss. Let us be there in our community in supporting families in this journey of grief and be mindful not to dismiss their heartache and be patient through this very important healing time. With a listening ear and an open heart we can be there for families and walk alongside them so that they can deeply feel our love and support.
I thank Joanne from the bottom of my heart for opening her heart on what was a very difficult time for her and her husband. She courageously shared her experience so that families can get comfort and healing of their own.