Anastasia Joy

On 28th December 2012, in a North London hospital, my husband and I were given the devastating news that our unborn baby had Anencephaly, a fatal condition.

Our hearts ache for anyone receiving this (or similarly fatal) diagnoses, as we know how utterly devastated, heartbroken, frightened 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. So, as a couple, we were very familiar with the anguish of stillbirth and loss. We know how heart-breaking 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 the UK.

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 - particularly on this very helpful website. 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. The stories we read on this website gave us such courage in facing the months ahead.

We realised that once one 'tames the appearance of the birth defect' by familiarity, parents can see beyond it to love and adore their newborns, just the same as when the baby is healthy. We hoped that this would be our experience.

I have to confess, that at first I found some of the images of babies with anencephaly very upsetting and I cried looking at those photographs. But being Christians, we immersed ourselves in what the Bible has to say about all children in the womb. We were reminded that all children are 'fearfully and wonderfully made by God himself as He knits them together, according to His design (Psalm 139). The word 'fearful' in this context is more appropriately understood as 'awesomely made' – reflecting the awesome nature of God. This gave me such confidence, as I knew that, no matter what other people thought of our baby, as parents, we would feel the same love & pride when we finally met our baby. Anencephaly or no anencephaly, our baby was made by God Himself and this baby was His gift to our family.

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 (through the facebook support group, connected to this website). This was absolutely invaluable support as we came to terms with our baby's diagnosis and prepared for the birth. It felt like a 'virtual antenatal class' and I had almost daily emails back and forth with the handful of women who were due with babies around the same time as me.

We set about showering our baby with as much love and joy as we could squeeze into the short time we had together. We found out that she was a girl, and named her Anastasia Joy. Anastasia is a name which means 'resurrection'. Given the particular fragility of our daughter's body and the certainty of death accompanying her birth, we were so aware that the resurrection promised in the Bible was and is little girl's only hope: "The body that is sown is perishable, it is raised imperishable; it is sown in dishonour, it is raised in glory; it is sown in weakness, it is raised in power" (1 Corinthians 15 v 35-55). The fact of the matter is that anencephaly is a stark example of the condition of all of our physical bodies. We are all born with bodies that are prone to a process of aging, decay, sickness, injury, perishability and, ultimately, death. Our baby's body may have appeared more 'dishonourable' than that of a perfect and healthy baby (making it seem necessary to cover her head with a hat), but in reality, all babies that are born will, sooner or later, die. As such, the only hope for our baby (and indeed any child born into this world) is the resurrection promised in the Bible, and bought by Jesus Christ on the cross. So we gave our daughter a name which reflected the hope we have for her. 'Joy' was given as her middle name, in memory of my Mother who had died 5 years before. It was also given as a name to Anastasia, in the knowledge, that our daughter would only ever know eternal joy, in her life beyond the grave: It turned out to be a fitting middle name because she brought us more joy than we imagined possible.

In preparation for her arrival, 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 fragile baby.

Anastasia Joy arrived in early May 2013, 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.

The final stage of delivering Anastasia was, undoubtedly, the hardest thing I have ever had to do: I remember saying "I can't do this. I cannot do it". It wasn't so much that I couldn't physically do it - it was mostly that I just didn't want to do it. I could feel her moving within and was so aware that my pushes would bring her time with us to an end, rather than a beginning. I knew my body was telling me to push, but my heart was telling me not to! The gas and air was taken away and calm eventually came into my heart as we asked God to give me the strength, courage and ability to do this final and painful thing for our daughter.

Anastasia was born alive, weighing 2lbs exactly. As per my birth plan, a hat was popped on her head and she was passed straight to me. Her umbilical cord was not cut and the injection to speed up delivery of the placenta was not administered. She lived in our arms for a spell-bindingly beautiful 80 minutes: She didn't take a breath but her heat was beating. She kicked, moved and held our fingers. We had her baptised and just soaked in those precious moments with our little girl. She was incredible peaceful and showed no signs of pain or distress. We had some very special time 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 parents who have 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 Anastasia was healing for me because 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.

If you have found this site because you have recently received a diagnosis of anencephaly for your child, it is my hope that our story fills your heart with courage. Carrying to term may be the most frightening thing you have ever had to contemplate doing, but it can also be the most amazing thing you will ever have the opportunity do. Be reassured: you are not alone. This site can put you in touch with others who have walked this path and some are going through it now – and can walk it with you. Nothing can take away from the real tragedy of this diagnosis – not even a termination. Losing a child is always terribly sad and stays with you a lifetime. But there is something profoundly empowering and wonderful in being able to nurture and love your fragile child, for as long as he or she has life. That joy can stay with you your whole life too.

'There is no fear in love. But perfect love drives out fear' 1 John 4 v 18

Last updated March 19, 2019