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Theo Nathaniel


Theo Nathaniel, baby with anencephaly

D Day (Diagnosis Day)

It was our first child, we were so excited and sadly so very naive. I'd had my 12 week scan and no problems were picked up, so I had no reason to think anything was wrong. It was time for the 20 week scan and I and my husband were very excited. It was Friday 29th October 2010 and I'd had a great day at work, a really productive day and was happily telling everyone I was going for my second scan and I couldn't wait.

While in the waiting room, my husband was joking around saying he would be able to see what the gender was. As I lay on the bed, we got to see our precious baby again, the technician was very quiet and looking for a long time, not saying anything. But we just thought this was normal. The technician then turned to me and said, "I'm so sorry, the top of your baby's head and brain hasn't formed properly, I need to get the consultant to explain more to you." I felt like I had been punched in the stomach, my mind was racing. I turned to my husband and started crying. He was telling me it might not be that bad, and not to worry. But I knew it was bad, I just knew. The consultant arrived and explained that our baby was "incompatible with life", that there is nothing they can do, that my baby simply cannot live. I tried digesting his words, but I just couldn't believe that all my hopes for my baby were dashed away within a few minutes. It felt like the world how I knew it had ended. The consultant explained what our options were, that most people don't see the point of carrying a baby destined to die and induce early, or we could carry to term at no risk to me. He told us to come back on Monday with our decision.

My husband and I left the hospital, I was crying my eyes out, everything was a blur. We drove home in stunned silence. Once home, we sat down and I said I wanted to get on the internet. The consultant hadn't even told us what our baby had, and I was desperate to put a name to this condition. It terrified me not knowing anything about it. I sat looking at my tummy and I realised my feelings had changed toward my baby. The baby I loved and protected and talked to I was now frightened of and resentful. I was afraid of it kicking and moving around, I just didn't want to be reminded that it was still here. I was terrified of what the future held. We prayed together for God to lead us and then we got on the internet.

Through a simple search we realised what our baby had was called Anencephaly and that it was indeed fatal. I searched for that 1% chance that the baby could survive but I didn't find it. Instead, I came across Monika's website anencephaly-info. This was truly a Godsend to me and it was through it that I learned carrying to term was a very realistic option and from reading stories from countless women, I learned that they never regretted it and loved and cherished their babies.

During that evening, we began to realise that carrying our baby was no longer an "option". We had a responsibility to love and care for our baby for as long as God allowed. The strength that God gave me that evening was certainly not my own, I know for sure that God was carrying me. I must have read every story on Monika's website. For me, knowledge was power. The more knowledge I got, the more I felt sure that I could do this, and that I could do it with my head held high.

Learning to love again

Over the next weeks, I began to bond with my baby again. We found out we were having a boy, and I began to love him like I did before the diagnosis, but with a stronger love, knowing that this may be the only chance we get with him alive. I told people straight away. Everyone was heartbroken for us, and I'm so glad to say we didn't experience any judgement. I was so afraid of what people would think of our decision. When we had told the consultant, he was shocked to say the least, and in my follow-up appointments I was always "kindly" reminded by him that "most people terminate" in order to excuse his lack of knowledge when I was asking so many questions. It made me so sad to think that to the medical community my baby was worthless, something to just forget about and move on from.

One of the quotes that I came across while pregnant that really touched me was "Life is not measured by the number of breaths we take, but by the moments that take our breath away."

We decided to name our baby Theo, the meaning is "Gift of God" and we knew that is exactly what he was.

Coming to terms

The pregnancy was difficult emotionally, it was very hard to carry a baby that was very much alive and active, but to know he couldn't ultimately survive was so unnatural. I believe it is one of the biggest contradictions in life, to have life growing inside of you but will ultimately die when born. I found writing very therapeutic, sometimes I would write down my raw feelings or write poems, and I also gained a lot of support from online support groups and made lifelong friends through them.

Many people told us not to give up hope, that doctors can be wrong etc etc. Though these people had kind intentions, this was not helpful for us. I and my husband accepted from the beginning that our son had this fatal diagnosis. We believed that God absolutely had the power to heal our son, but it became very evident to us that it was not His will. God had other plans for us, to teach us so many things through Theo's short life. At the time, people may have viewed this as a lack of faith in God, but we had learned a valuable life lesson that our will is not always God's will, and that He never promised us a perfect life without pain or sorrow, but He did promise to carry us if we choose to lean on Him.

As my due date came and went, I started to get extremely anxious over the possibility that Theo may not be born alive, I wanted nothing more than a few moments with my son alive and so I began to question whether a c-section would be a better option for me in order to increase those chances of a live birth. I sought advice from Monika (the website's author). She asked me the following questions "Is your goal above all that Theo is born alive? Or do you see his delivery as an integral and natural part of mothering him, sharing something momentous together? Are you ready to shift your focus away from a live birth to an active, natural and gentle birth that Theo and you do together? Instead of a doctor delivering your baby, do you want to deliver Theo?" From then on, it was loud and clear and I knew what I had to do. Looking back, bringing Theo into the world is the proudest achievement of my life.

Theo Nathaniel, baby with anencephaly

Saying Hello and Goodbye

I intended to wait and go into labour naturally, but Theo was just too comfy. We opted for an induction at 42 weeks and Theo Nathaniel was born at 8.54pm on 4th April 2011. He weighed a healthy 7lb 3oz and we were blessed to meet him alive for a few hours. It was just enough time to be loved on by his closest family.

When I think back to the day of the diagnosis, I think of the fear I had, the pure fear I had never experienced, only in my nightmares, that I had no idea what the future held. How was I going to give birth to a baby I knew couldn't live? Or even worse how could I give birth to a dead baby? I think back and crazy as it may seem, I smile. I smile because never in my wildest dreams could I have imagined the strength that God would give me. Not only to carry my son, but to cherish his every kick, to celebrate his birth, his life and to proudly call him my son. I can't mourn my son because he died. I smile because he lives.

"ALL things work together for good to them that love God, to those who are called according to his purpose" (Romans 8:28)



Theo's parents had two healthy babies after him.



Last updated July 10, 2019