Go to content; Go to main menu; Go to languages.

Ethan David


Ethan David, baby with anencephaly

Our sadness, our joy and our Anchor

Testimony of a family blessed with a baby deemed 'incompatible with life'


On 21st May 2015, I stood in my bathroom and watched with excitement as two little pink lines appeared on the stick in my hand, my husband Tom and I were expecting another little life to love and cherish. We had been married just over 3 years, having dated for 6 months after meeting at church and becoming friends 2 years earlier. We had hoped that we would conceive around then so that our children could grow up close in age. Our beautiful daughter, Annie, had just turned 1 year old so our hopes had become reality. We were happy and knew Father God's blessing and faithfulness in our lives.

We went for our first ultrasound scan full of expectation, the sonographer showed us our baby's tiny heartbeat, after experiencing a previous miscarriage this was such a relief to see.

Unfortunately our relief quickly turned to shock and sadness as the sonographer expressed concern about the development of our baby's head. We were referred to a consultant at The Royal Stoke Hospital and at 12weeks gestation, Tom and I had it confirmed that our baby had Anencephaly.

Anencephaly is a foetal developmental abnormality resulting in an absence of major parts of the brain, skull and scalp.

We were given the recommended option to terminate the pregnancy within the week because Anencephaly is deemed incompatible with extended life outside the womb and the termination process would be easier if done as early as possible.

As expected, we were deeply saddened, devastated and confused. Our hopes and dreams of another child had become reality so quickly and then, it seemed, we wouldn't get to keep our so wanted and much loved baby after all. How had Father God allowed this to happen? What were His sovereign purposes in this? How would we cope with this for the rest of our lives?

As soon as the words 'incompatible with life' were spoken, a haze settled into our life, where there had previously been so much clarity. Our life suddenly had so many uncertainties, we had so many unanswered questions but the decision to terminate our pregnancy was never an option for Tom and I, we loved our baby from the moment we knew he existed. We desperately wanted the chance to meet and protect him and give him a chance of life, however small. We wanted our baby know he was loved, treasured and accepted by us. We wanted our baby to always be part of our little family and to be part of the lives of our extended family and friends.

Ever since we had both individually given our lives to Jesus, myself during my time at university and Tom as a young boy, we have both wanted to allow God to be at the centre of every aspect of our lives. We know that Father God knew everything about our baby and has been intimately involved in every aspect of his creation from the very moment that He chose him to be conceived to us. Our baby had never been beyond the loving care, concern and watchful eye of the Lord, he is Father God's creation and has always belonged foremost to Him. We firmly believe our baby's destiny has always been according to God's specific plan and purpose, inside my womb, on earth once he was born and for all eternity. We know God chose Tom and I to be his parents, using us to give life to this precious child.

We expressed our wishes to carry our baby to term and the hospital staff were wonderfully compassionate and supportive even though this decision was against the norm in their experience.

At 16 weeks gestation we found out that our precious baby was a boy, our first son. We called him Ethan, the name we had always wanted for our first born son. The name 'Ethan' means strong, firm, warrior; tributes any Christian parents would desire for their son and, we felt, so fitting for a baby boy who was deemed 'incompatible with life'.

In Jeremiah 1:5, in The Bible, Father God says, "Before I formed you in the womb I knew you, before you were born I set you apart", and so we believe that even in the early stages of pregnancy our baby was a person in God's eyes. God knew who and what He was creating Ethan to be.

But even though we are people who have chosen to have relationship with God, we will never understand His plan fully. We can't always comprehend His purposes but we do know that God does not make errors, it was not an error that our Ethan was conceived to us.

Confident that Father God chose us to be Ethan's parents, we chose to journey this path in our lives together with God, trusting only in Him, reassured that He was, and is, with us and He is for us, despite the fact that the journey ahead would be such a hard one and despite the fact that we live in an imperfect world where foetal developmental abnormalities, like Anencephaly, occur.

We were desperately sad but totally sure of our hope and security in Jesus, our Anchor in this storm.

Ethan David, baby with anencephaly

We set about making precious memories with our boy, we celebrated and treasured our pregnancy with Ethan, aiming to focus on the God given blessings and joy rather than the sadness and loss. Some days this was incredibly hard to do but we wanted to honour his life, we felt honoured and blessed to be his parents and wanted this to overshadow our grief.

Our family, friends and church family supported us wonderfully. I wrote a pregnancy journal of the significant, and sometimes the small, things that we did whilst he grew inside me.
We told him how much we and Father God loved him.
We had 3D scan pictures and DVDs made.
A lovely family friend, a gifted photographer, helped us create precious photos with a 'family bump' photo shoot at our home.
Dear friends and family hosted a 'Celebration of Ethan's life Shower', we spent a day of pampering, recording our thoughts, hopes and prayers for Ethan and enjoying afternoon tea.
I bought him little boy new born clothes and hats, soft toys and a swaddle blanket that would be just his. Some other friends had a beautiful blanket embroidered with his name on and others lovingly designed squares to put together to make a quilt in his memory.

Every movement and kick that Ethan made inside me is etched in my heart, even the 3am ones when I lay wide awake with him bouncing on my bladder! His movements were stronger and more significant than I'd felt with my first full term pregnancy. Some of his most active time was during sung worship with our church, another was when we went to the Halle Orchestra in October, he sure seemed to hear and love music.

His big sister Annie loved to talk to baby Ethan inside, learnt to say his name and blew raspberries on my growing belly.

He was a blessing to all of us whilst he grew safely inside me and Father God gave us the peace to enjoy him.

As well as savour our time whilst pregnant with Ethan, of course, we prayed. We prayed and prayed and prayed, it's amazing how a valley in one's life can bring one to prayer like never before! We were desperate for God to intervene. Some of our dear church family organised prayer gatherings. We prayed to Father God, the One who created all and holds all things together, the King of kings, the great, exalted, victorious One. We prayed for miraculous healing, as we knew Father God was more than capable of, we asked that He would heal our son on earth and let us keep him here, to allow us to nurture him and see him grow up in our home with his sister. But, above all we prayed that His will would be done, we longed to walk within his sovereign plan and we prayed for strength and peace to do so.

We prayed for a complication free pregnancy and an easy labour.
We prayed I would carry Ethan to term and that he wouldn't be born sleeping but we would meet him and hold him alive.
We prayed he would stay with us long enough to come home and meet his big sister and that she would know and love him.
We prayed that if it had to be so, that Ethan would pass from earth into heaven peacefully whilst being loved upon in our arms.
We prayed God would protect our marriage and we would stay strong together.
With all our hearts, as is our ultimate hope for our life together, we prayed that God would be glorified, we hoped many would be touched by our son’s life as God used it for his glory.

Each hospital appointment we went to, we were terribly disappointed to see Ethan's head remained unchanged, in all other respects he was a perfect little baby.

Ethan David, baby with anencephaly

The precious months I carried Ethan flew by and at 40weeks and 1 day gestation, after a relatively easy and complication free labour, he was born and he was alive!

I held him on my chest and we just soaked him in, marvelled at every part of him, we stored up in our hearts each breath, movement and noise he made. The earth seemed to stop in those moments, we were so full of joy to hold our beautiful baby boy.

The defect to his head remained but he lived a very precious 7 hours in our arms. He came home from hospital at 3 hours old, met family and friends, was lavished in cuddles and later passed peacefully from his Mummy's arms into the arms of Jesus.

Ethan experienced more love in those short hours than some experience in an expected life time. He was beautiful, precious and wonderful.

Father God didn't answer our prayer that Ethan would be healed and remain with us on earth but the main prayer we prayed was for Gods will to be done in ours and in Ethan's life and that God would be glorified. We choose to continue to trust that His ways are greater than ours. Romans 8:28 in The Bible says: "And we know that for those who love God all things work together for good, for those who are called according to his purpose." We don't fully understand God's plan or his reasons for not healing Ethan on earth but we have glimpsed God's goodness in this sadness.

It would be easy to look at what God didn't do, to blame him and disbelieve his love because Ethan is no longer with us. But actually God has answered every other prayer we asked, He did and will continue to do so much. He has never left us, He has strengthened us when we have been so weak, He has been the light in our darkness and brought such peace in the heart ache. He is our anchor in this storm.

We have been truly blessed by our baby Ethan. The time God allowed us to keep Ethan here with us for a full term pregnancy and once he was born was a wonderful, miraculous joy. True to his name, Ethan was a strong, warrior, it was amazing that he was strong enough to be born alive and stay with us to come home. We had time to savour him and marvel at his beauty.

Ethan is now healed perfectly and will have life in God's presence for all eternity.

As Christians we know that our Saviour Jesus has made a way for us to enter eternity by dying on the cross in our place, putting our sin that separated us from Himself, to death. This has redeemed us to God and so one day we are certain we will also enter the glory of heaven for eternity and there we will meet our Ethan again. Until then we will celebrate our precious first born son and his life for as long as we live on earth and we will always be blessed to be called his parents.

We are so proud of him and the way his little life has blessed and touched the hearts of so many people.

We can honestly say that our pregnancy and time with Ethan once he was born were some of the most joyful days and hours in our lives. We miss him so much and hurt because he is no longer in our arms but we have so much joy because he once was, because the impact and essence of his life will be with us and part of us for as long as we live and because we have glorious hope that we will see him again.

We continue to look to Jesus to be our anchor, strength and steadfast hope. We love to hear about how Ethan's life has blessed others and helped them to think with more joy upon the blessing and value of their own lives and of the lives of those around them. We love that God has used our journey over the last year to encourage and support others already and we hope and pray He continues to use our family in this way.

We want this legacy of Ethan's life to continue. We will never miss our first born son any less than we do now, we walk each day carrying the pain of not having him with us but we continue on with our lives for Jesus, the giver of peace and joy, trusting in Him only and seeking to glorify Him in every day as it comes.



Sarah can be contacted through the webmaster



Last updated July 9, 2019