Pregnancy is often a time of great joy and anticipation, however for some parents this is replaced with heartache when they learn their much loved baby has a fatal condition or a poor perinatal outcome. The heartache, grief, and fear are accompanied by the impossible decision of whether to continue with the pregnancy. While some will opt to terminate the pregnancy, if you choose to, or are thinking of carrying to term we have tried to provide some useful information and places for support.
What you need to know after the initial diagnosis
It can be very difficult to take in information when you are distressed or in shock. It is important to have all the information you need about what has been diagnosed in your baby.
It may help to have someone with you at your appointments. It can also be useful to have a list of questions written down. Ask your medical team to explain things carefully and clearly, especially complicated medical terms.
Don’t feel rushed into making your decision. Time is on your side and you will need plenty of time to take in all the information and consider the options carefully.
Will my baby suffer?
A concern for many parents considering carrying to term is whether the baby will suffer. You may find it comforting to know that many life-limiting conditions are not inherently uncomfortable for the baby. If pain is a possibility it can be treated aggressively and effectively, you can also choose which medical interventions you do or do not want for your baby. If you baby has a terminal illness they will not need to rushed to intensive care or undergo minor routine procedures such as blood test or injections that may have caused discomfort.
When carrying your baby to term it is important to have the emotional and practical support around you. If you do not have the support around you we have provided some resources and links you may find useful.
A Gift of Time is a gentle and practical guide for parents who are (or are considering) continuing their pregnancy knowing that their baby’s life will be brief. When prenatal testing reveals that an unborn child is expected to die before or shortly after birth, some parents will choose to proceed with the pregnancy and to welcome their child into the world. With compassion and support, A Gift of Time walks them step-by-step through this challenging and emotional experience—from the infant’s life-limiting prenatal diagnosis and the decision to have the baby to coping with the pregnancy and making plans for the baby’s birth and death.
ARC (Antenatal Results and choices) is a national charity which provides non-directive support and information to expectant and bereaved parents throughout and after the antenatal screening and testing process
Be Not Afraid (BNA) is a private non-profit corporation whose mission is to provide comprehensive, practical, and peer-based support to parents experiencing a prenatal diagnosis and carrying to term. In addition, BNA encourages development of new services so more parents find support at diagnosis by offering training, consulting and technical assistance as well as materials to other organizations and individuals committed to service development.
Isaiahs promise answer questions and provide resources to help parents who have received a severe or fatal diagnosis become better informed so as to reduce some of the unnecessary anxiety. They help prepare a birth plan to give families some measure of control over a situation that is mostly out of their control. Through their growing network of support, they provide numerous personalized keepsakes for the families.
Perinatal Hospice and Palliative Care provides a hub of resources and support surrounding the choice to continue a pregnancy with a poor perinatal outcome. Perinatal hospice is not a place; it is more a frame of mind. It is a way of caring for the pregnant mother, the baby, the father, and all involved with dignity and love
Celebrating your baby
Choosing to continue with your pregnancy gives you the opportunity to spend time with your baby and create memories. Some ideas for creating memories with your baby are:
- Write a journal of your time together
- Have a 3D scan to get some wonderful images of your baby
- Have your bump painted or arrange a pregnancy photo shoot
- Purchase a clay imprint set to take hand or foot prints of your baby
Susanna tells us her story…
“This baby will change me and I want to get to know her”
On 28th December 2012, in a North London hospital, my husband and I were given the devastating news that our unborn baby had Anencephaly. Anencephaly is a Neural Tubal Disorder (similar to Spina Bifida) which means that a major portion of the brain, skull, and scalp is absent. It occurs during embryonic development and is a fatal condition for the baby.
Our hearts ache for anyone receiving this (or similarly fatal) diagnoses, as we know how utterly devastated, heartbroken and disorientated it leaves you feeling. Indeed, when we received the diagnosis of anencephaly with this, our third baby, we had already experienced the shock and grief of stillbirth: Our first baby had been stillborn in 2009. Our second son also almost died in the womb, but, thankfully, I ‘counted the kicks’ and he was safely delivered by emergency C-section, which saved his life. So, as a couple, we were very familiar with the anguish of stillbirth and loss. We know how heartbreaking it is to leave the hospital with empty arms and pass other parents in the corridor proudly taking their babies home. We know how it feels to be purchasing a burial plot rather than a crib.
Looking back, I assume our doctors wanted to spare us this pain once again. On the day we received the diagnosis of anencephaly, our doctors in that London hospital assumed we would abort our baby, although they never uttered that exact word. The gently told us we could ‘resolve matters’ that day. I could sign consent papers and a ‘procedure’ could be done. Without explaining that they would be ending the life of our baby, in shock and disorientation, I could so easily have signed those papers. It now terrifies us that we could have terminated our baby, without really understanding what I was doing, and missed out on something profoundly meaningful and beautiful: The chance to love, hold and know our baby. It was not even made clear to us that carrying our baby was an option: So common is abortion in our hospitals.
But I was simply told that my baby’s condition was ‘incompatible with life’. I was consoled, as if my baby was already dead and was reassured that it was not my fault. The Doctors even began to talk about me taking a higher dose of folic acid if we wanted to ‘try again’.
But my baby was not dead. It was only when, though my tears, I pointed out I had just seen a heartbeat, that the Doctors seemed to admit that my baby was alive and that the pregnancy could progress normally if left to nature.
Having known the value and worth there can be in carrying a baby who does not survive birth, we knew that we would resist an abortion. I remember saying to my Doctors,
“My first baby changed me forever. I am glad I had him, because he taught me so much and I am a stronger person because of him. This baby will change me too, and I want to get to know him or her. We need to stop talking about ‘resolving matters’ because I need on-going pregnancy care”.
Thankfully my doctors were kind and supportive of our decision to carry to term. We agreed a care plan for my on-going pregnancy, which included weekly scans to check for a heartbeat, until I could feel movement. I was reassured that, if our baby was born alive, the paediatricians would help us to make sure the baby was comfortable, pain-free, warm and fed. They would aim to make sure we had as much time with him or her as possible, without unnecessary medical intrusion.
When we arrived home, we devoured everything we could find on the internet about anencephaly. We discovered, to our surprise, that these babies can actually live a short time (sometimes months or years) and that parents who carry to term can find tremendous joy, peace and satisfaction in doing so: They can embrace their child’s short life and shower their children with love and affection.
Once one ‘tames the appearance of the birth defeat’ by familiarity, parents can see beyond it to love and adore their newborns, just the same as when the baby is healthy. Online, we made friends with other parents carrying to term. One mother had her sweet baby for ten precious months, and talks of the joy her daughter brought into their lives. We found other mothers who were currently pregnant and formed a ‘virtual antenatal class’.
We set about showering our baby with as much love and joy as we could squeeze into their short life. We found out that she was a girl, and named her Anastasia Joy. We made hats and blankets for her birth. We planned for a photographer to come capture our short time together. We bought various ‘keep sakes’ kits (such as hand and foot prints mementoes). Our friends even planned a baby shower, to give our daughter one party, in lieu of the many she wouldn’t have. We cherished every moment. As well as our regular scans, we arranged 4D scans too. Watching her moving, and even smile, in the womb was so wonderful. We continually marvelled at how lively she was, for such a poorly baby.
Anastasia Joy arrived in early May this year, ten weeks early and of her own accord. As it happened, her birthday was the day before the baby shower we had planned for her. My labour was completely natural, relatively straightforward and bearable. Whilst the final stage of delivering Anastasia was, undoubtedly, the hardest thing I have ever had to do, she was worth it. I could feel her moving within me, and I was so aware that my pushes would bring our time with her to an end, rather than a beginning. But eventually calm came into my heart, as I did this final (and painful) thing for my precious daughter. Immediately after her birth a hat was popped on her head and she was passed straight to me. She lived in our arms for a spell-bindingly beautiful 80 minutes. In that time, we had her baptised and just showered her with love and affection. She was incredible peaceful and showed no signs of pain or distress. We had some very precious moments as a family of four. It was wonderful and worth all the heartache. We feel blessed that she was (and is) a part of our family.
Over 200 people came to her funeral service, and we buried her with her older brother, in a grave adjacent to my mother. After the service we had a party (the shower that we had missed) and we celebrated her brief, yet precious, life.
In the days following Anastasia’s diagnosis it was impossible to imagine how our time with her could have been so beautiful, but it was. My heart aches for any mother who has to experience the shock of receiving a fatal diagnosis for their baby. I know those feelings of shock, disbelief, fear and distress. In those early days, I thought I wasn’t strong enough. I thought that leaving the hospital without my baby, for a second time, would crush me emotionally. I thought that no one could go through a pregnancy like this and survive – and even less so, be thankful for it.
But I was wrong. It was nowhere near as awful as I had feared and it was far more wonderful than I dared imagine.
I am stronger for having had my daughter, not weaker. I am more fulfilled as a mother, not less fulfilled. I am grateful that I held her alive, not angry that she is gone. I found that carrying, and loving, my baby for as long as she had life, was healing for me. It worked with my maternal instinct, rather than against it.
My greatest abiding sadness of the whole experience is that abortion was assumed to the ‘best’ option for my daughter, me and my family: The assumption was that our daughter did not deserve to be given the life and love that was destined to be hers.
I recently took part in a research project at Duke University in the United States, which is studying the psychological wellbeing of mothers after they chose to abort or carry to term their anencephalic baby. I have found, in both my own experience and the experience of mothers who I have met online, that carrying to term can have had deep emotional and psychological benefits, which last a life time. Abortion may seem like the only option when a fatal diagnosis is received but many mothers, like me, have experienced great peace, even joy, in embracing our fragile and precious children.