I found out that I was carrying a baby boy with Hypoplastic Left Heart when I was 5 months pregnant. My baby had a condition where only half his heart had formed.
In the shock and sorrow of this devastating diagnosis, we were given three terrible options by the cardiac consultant. The first option was to terminate the pregnancy. The second was to put our baby boy through a set of very major open heart surgeries and the third option was to hold him while he died after his birth (comfort care). This was a little boy whom we had loved and longed for and now we were being presented with choices, each of which would harm him, probably kill him and undoubtedly cause him to suffer. Our strongest instinct was to protect him.
Most parents opt for termination of pregnancy with this condition because the operations are so traumatic, extensive and risky with no hope of cure.
My baby was worse than most because he did not have a measureable aorta in all the scans that they continued to do through my pregnancy. He would have needed four open heart operations leaving him critically ill, unable to be breastfed or held. These babies are flown to London following delivery, and are often refused surgery due to little hope of success. This would then mean they would die either en-route or on arrival.
We were overwhelmed by the immensity of the decision ahead of us and felt the need to be one hundred percent sure of what was the right thing to do in the face of such terrible options. We needed God’s guidance like never before.
During the time we were trying to decide, I had a very vivid dream. I dreamt of Moses’ mother, the young Hebrew woman who was faced with a terrible decision. Her story is told in the book of Exodus chapters 1 and 2 in the Old Testament of the Bible. Her people were slaves in Egypt where Pharaoh had ordered the murder of every Hebrew firstborn son. She had hidden her baby son, but could do so no longer after 3 months. She made him a basket lined with pitch and placed him amongst the reeds. She let him go on the River Nile.
I dreamt of her, of her pain and anguish and of the horror of letting her precious son go. Some time later, she was called to the palace to be a wet nurse to a baby who was found by Pharaoh’s daughter in the river. This baby was her son, Moses, and she was able to be his mother again. It felt God speak to me through this story. It involved trusting Him that I would still be able to be a mother to my son, and that although I would release him in death, this would not be the end of the story. As John and I spoke and prayed together about this, I found a peace in the midst of my distress.
We decided that the most loving way forward for our little baby son was to live through the pregnancy and to plan to welcome him, hold him and enjoy what time we could before he died. This option seemed to us to allow some room for God’s miraculous intervention, which is what we were praying for too, of course.
Psalm 139 says, “You knit me together in my mother’s womb. Every day ordained for me was written in your book before one of them came to be. I am fearfully and wonderfully made.”
The words leapt from the page through my tears, “Your eyes saw my unformed body…”
Our baby son’s unformed heart, his little body was beyond our sight. A hazy ultrasound might give some information, but we certainly could not see him, as God sees him.
I meditated on the intricate beauty of the life woven inside me and the mystery of that amazing little person growing there ‘in the secret place’. I was overcome with gratitude.
I then knew deep in my heart that our son was a gift, given from God, and that our love for him would involve trusting the God who made him.
I felt completely overwhelmed with grief and love for my little baby son- and yet as I clung to God, I found him to be there for me:
“I lift my eyes to the mountains. Where does my help come from? My help comes from the Lord who has made heaven and earth. He will not cause your foot to stumble.” Psalm 121
In the months ahead, my faith was to be tested through fire. Through this, God became more real, less abstract and more alive to me. Knowing Him and finding comfort in Him became more precious to me than my own life, in the same way that my son’s life became more important to me than my own.
It was as if the hazy dark ultrasound scan of my spiritual life was being formed into a tangible God whom I could cling to, as I looked with hope to the day I would embrace my son:
“For now we see as through a glass darkly, then we shall see face to face” I Corinthians 13
I felt a strong need to speak to somebody who had been through the same experience although I was told this was unlikely because my son’s condition is rare and the hospital consultants did not know of another mother who had carried a baby to term with a view to opting for ‘comfort care’. However amazingly I met a wonderful girl who had also carried a baby son with Hypoplastic Left Heart. She told me about her pregnancy and her son’s birth and how her beautiful baby had died in her arms. I was grateful for this friendship as I now knew there was someone who had been through this and whom I could speak to.
God gave me friends to comfort me, which I needed so much. One of them was Judith whose baby daughter, Charis (meaning ‘grace’) died before she was born. She visited me, cried with me and prayed with me. I found Jesus to be real in her life, comforting me through her compassion:
“For just as the sufferings of Christ flow over into our lives, so also through Christ, our comfort overflows.” I Corinthians 1
My little daughter, Anna was the greatest of comforts and holding her and loving her kept me sane and gave me an immediate focus in every day.
I wrote this in my diary about 7 months into my pregnancy:
“We are more and more aware that we need memories of our son now. We need a name that expresses what his life means to us and who he is. We want a name that conveys some of the paradoxical joy and pain of loving him now”.
After many weeks of thought and prayer and searching for names, we chose ‘Benjamin’.
In the Hebrew Scriptures, there is a story about a baby boy called Benjamin. His father, Jacob, loved a Hebrew girl called Rachel and worked for her father for fourteen years to earn her hand in marriage. For many years, she was unable to bear children. In Genesis 35 there is a tragic story of a journey on which Rachel gives birth to her son. She was having great difficulty in childbirth, and was dying. In her distress, at the point of death, she named her son ‘Ben-Oni’ meaning ‘Son of my sorrow’. His father, grieving his beautiful wife, received his son in his arms and re-named him ‘Benjamin’, meaning ‘Son of my right hand’.
We felt this story of sorrow and loss, the separation between mother and son at birth was apt for our son. We also loved the way that the sorrow was turned to joy, as the son was received by his father. In reading this story, we were given great faith that our son would be taken home to his Father, the God who created him, and received with great joy in heaven.
We decided to visit the children’s hospice at Loch Lomond, Robin House. With the loving support of the staff there we planned to take Benjamin there after he was born so that we could all be together.
It was the most terrible thing to plan for our son’s birth and death at the same time. We even visited the funeral directors when I was heavily pregnant and chose a beautiful Moses basket style sea grass coffin, while little Benji was kicking away inside me.
When I was 32 weeks pregnant I wrote in my diary:
‘Every day becomes harder to bear. From the moment his cord is cut, my son will be on his road to death, unless God intervenes with a miracle.’
When I went into hospital for induction of labour, John was not allowed to stay with me. I was in the ward with other pregnant women, all expecting to take their babies home. The labour was the most painful experience of my life. I thought I had died, as I kept passing out with pain.
However, our son Benjamin arrived, peaceful, beautiful, blinking in the April dawn, wrapped and warm in our arms. He was so perfect. My heart almost burst with joy and sadness at the same time.
We had two wonderful days together with him, which his sisters and family shared with us. We all held him and kissed him, sang to him and loved him. We bathed him and carried him everywhere in our arms. I was able to breastfeed him too, which meant so much to me.
On the first night of his life, he was snuggled in my arms all night. I did not want to miss a moment with him. He was so beautiful and he was finally safe in our arms.
On the second night of his life, we were in Robin House, the children’s hospice. Benjamin became unwell and changed colour. His circulation was failing. John and I held him all night, as he was given medication to ease the symptoms. Just before the sun rose, he died in our arms, exactly 48 hours after his birth. We had waited so long to meet him. There is so much more we would have wanted to share with him.
I have never known grief like it. I would rather have died in his place. If only I could have given him my heart! We shook with sorrow. It was a pain that caused the labour and birth to fade into insignificance.
I continued to produce milk and in my bewildered sleepless state, I kept looking for him, thinking I must have lost him somewhere. In the fretful nights I would be panic-stricken, reaching for him but not finding him. I was just desperate to hold him. The desolation of this loss was almost too much to bear. I wanted to have my children together in my arms, but Anna was alive and Benjamin was dead. These were the darkest days of my life.
As I laid my beautiful little baby son, Benjamin, in his sea-grass coffin I felt that my heart had broken. The road has been very long without him, and this life has seemed very empty at times. But we were sustained and strengthened by the love of friends and family and felt those around us grieving with us, recognising the immensity of our loss. Last Christmas God gave us a second son, 18 months after Benjamin’s death. Joseph Jude, who we call J.J, has brought us so much joy, and finally Anna has a baby brother to play with and grow up with.
I miss Benjamin every day still but look with great hope to that day when death will be conquered, tears wiped away and we will all be together again.
In that day it will be as it says in Revelation 21:
“He will wipe away every tear from their eyes, and death shall be no more, neither shall there be mourning, nor crying nor pain any more, for the former things have passed away.”