Blue Baby

By Tracy Helen Beatty

Where is God when calamity comes? If God is all powerful why does He allow our loved ones to suffer? When wading through hopelessness, these questions overwhelm many of us. This is the account of my own wrestling with similar agonies of the soul when I was told that my child was dying.
Jacob was diagnosed at the age of 1 with a severe congenital heart defect that was so complex it was deemed untreatable. In desperation I reached out to God after previously neglecting my relationship with Him. I had wandered into passivity, but God was waiting to comfort, strengthen and renew my faith.
This book documents Jacob’s journey through years of surgery, defying this prognosis. It also chronicles my struggle through perplexing seasons of pain, learning how a good God uses suffering for our growth, making us mature, fruitful followers. It is in the darkest times I have learnt to fear less and trust more, making me confident in His faithfulness. God did not answer my prayers for instant healing, but what He allowed in my life worked for my good. I try to capture the way God tenderly ministered to me during those times in order to encourage others to hold fast to Him. I hope to spur on those ready to give up, to overcome and look for the shards of light that can be found in seasons of darkness.

• Language: English
• Publisher: Austin Macauley Publishers
• Release date: Jan 4, 2022
• ISBN: 9781788484039

Tracy Helen Beatty

Tracy is married and lives in Bolton. She is mum to Caleb, Jacob and Jemimah who are all now young adults. She loves to walk Walter the Whipplington on the moors and spend as much time as possible in the Welsh countryside. She has worked in education for 25 years, 7 of which as a headteacher. She now teaches part time whilst writing.

Book preview

Chapter 1

Where Is God on the Worst Day of

Your Life

Monday morning, December 2003. Jacob, aged 10 months.

It’s funny how we plan out our days, sometimes far into the future, with no concept that our day may be arrested in ways we can never foresee. A dull, cold Monday morning promises nothing more than a monotonous day at work with the usual rhythms of family life. Meaningless concerns and futile purchases fill our minds that really aren’t worthy of such thought. It is only when something momentous happens that we are jarred out of this way of seeing.

It was Monday morning and I was on automatic as usual. There was regimented way of organizing a household with two little ones and getting to work with time to spare so I could get in the zone to teach my class. Tea had been prepared the day before, clothes laid out and breakfast cleared away. Lunches for all were made and positioned by the door with belongings for nursery and my humongous bag of files and resources. Anything that interrupted my morning routine wasn’t welcome, as very easily it could deteriorate into chaos. Nevertheless, this morning plans had to change. As I lifted Jacob out of his highchair to fasten him into his coat, I was concerned that yet again he was off his food and coughing. His dad, Simon, wasn’t prepared for him to go to nursery unchecked, ‘I think I’ll have to take him to the Doctors again. This cough isn’t going away and he looks like he’s really struggling to breathe. I’m really worried now.’ Flustered, I replied with agitation, ‘I expect he’ll just give him more cough medicine, like the last 10 times I’ve taken him. He just tells me I’m fussing.’ Persistently he pressed the issue, ‘Well I’ll take him again anyway. You go to work, and I’ll phone later with an update. The doctor might check him for asthma or something. We can tell he’s not right. He seems really lethargic.’ He could not have been aware at this point that his actions would save his life.

I positioned Caleb into the car ready for nursery with a perfunctory kiss and set off, irritated that the doctor had been fobbing us off for weeks and expecting the same reaction when Simon took him again. Being self-employed, it was not ideal for him to keep taking time off work for multiple trips to our local GP who was dismissive of our concerns. Heaviness hung like a cloak round me as I dwelt on what could be wrong with him; meningitis or possibly pneumonia? It wasn’t the usual car journey to nursery that morning. I would usually be joining in with Roald Dahl on CD for the umpteenth rendition of George’s Marvellous Medicine, Caleb’s favourite story. Instead, I had a sickly, visceral notion things were not right. As I bundled him into nursery, rather too quickly as my eye was on the clock, he seemed concerned, ‘Mummy, what wrong with Jacob?’ I felt bad that I hadn’t been able to hide my worry from him.

‘Oh, he’ll be fine, my love, have a super day. Grandma will pick you up later.’ I didn’t anticipate grandma would be picking him up for many months to come and the morning school run would not be the same again.

As soon as I got to work, I had to push my fears to the back of my mind. The life of a teacher means you have to leave all your home problems at the door, put on the hat of perpetual jolliness, and get on with performing for 30 expectant six-year-olds. It was only when the headteacher came for me at break time to say there was a phone call that I was pulled out of teacher mode. The fact that no one ever phones school to speak to me instantly disturbed. Simon had an edge to his voice I hadn’t heard before, ‘You need to come to the hospital now. We’ve been rushed to the Royal Wigan Hospital. It was a locum that saw him, who immediately sent us here. There’s obviously something wrong.’

As I sensed the urgency in his voice, my heart started to pound. I grabbed my bag and asked the headteacher if I could be released. I said a swift goodbye to my class, thinking I’d be back later that afternoon. I can’t recall any of the thirty-minute journey to the hospital. I know by the time I got there I had convinced myself he had pneumonia which must be easy to treat, and Jacob would soon be well again. When I arrived inside the hospital, hot and bothered after a struggle to park, I was caught up in a swirl of panic. Simon explained in limited words he’d been ordered by the locum to dump his van anywhere and get him inside to be examined without delay. The Registrar now beckoned us into a room to speak to us. The urgency and seriousness of the medical staff signalled there was something terribly wrong. We were ushered into a white-walled side room with nothing but 4 chairs. The Registrar solemnly looked down in silence for a minute. He delivered the most painful blow imaginable. ‘Jacob does not have pneumonia. He has contracted Bronchiolitis. However, that is not the greatest problem. We have discovered Jacob has a severely deformed heart. His problems are so complex we don’t know how it could possibly have gone undetected up to now as he is substantially compromised. I’m afraid if he survives this, the long-term prognosis is uncertain. In the immediate, he desperately needs oxygen as his SATs¹are below 50. If he recovers, there’s nothing more we can do for him.’

My ears started ringing and I fainted. My body could not cope with the shock of what I was hearing.

As I regained consciousness, I understood exactly what people mean when they describe the moment when bad news is delivered as the bottom falling out of their world. The countenance of the professionals revealing their hopelessness was worse than the words they said. They couldn’t comprehend how such a complicated deformity could have gone unnoticed on his prenatal scans, hospital staff at birth, health visitor or by his local doctor. Attributing blame was not at the forefront of my mind. All I could think was this can’t be happening and utter shock numbed my brain. Jacob, meanwhile, was rushed to the ward and put in a breadbin full of oxygen. He was so weak by this time he simply lay there. I then had to face the phone conversations to explain to the family what we had been told.

Later that evening, dad came and sat with us as the Registrar and surgeons explained the extent of his problem. The medical details swarmed like bees buzzing in my brain, preventing me from taking anything in so I was grateful they wrote everything down. He had a three major heart defects called MAPCAs, Pulmonary Atresia and Ventricle Septal Defect². The specific combination of these three conditions and the extent of them were completely unique. As we listened, we started to question how we could possibly have missed the fact that his nails and skin had a blue tinge. Doctor Gladman looked totally apologetic as he explained they could do nothing for him. His heart was so deformed, he needed a heart and lung transplant, and that was a procedure that was too risky to perform in babies. We sat in silence. It was after the meeting, I noticed we’d been taken to the Rainbow room –the place you go when you’re told your child is dying or has gone. Over the next few days, I would ask question after question about whether we would take him home to die, how long he’d have, will have to stay on oxygen? The answers weren’t there. His complications were so complex, there hadn’t been a child with the same diagnosis grow to adulthood, so they erred on the negative. We were told to prepare ourselves that he would not live long enough to go to school. He probably wouldn’t see the age of two. I started to cry out to God for help.

This was actually the first time I had really spoken to God in a while.

January 2003: Newborn Jacob arriving home from the hospital to be greeted by his delighted big brother.

******

I was brought up in a Christian family where it was normal to believe in God, worship Him, pray and read the Bible. My parents were leaders in a Spirit-filled church and as it was only a small congregation, they were involved in everything. This meant I spent virtually all my childhood in church, which was something I did not resent at all, but developed my own faith from being young. There was no doubt in my mind of the existence of God. I personally had been healed from asthma as a child and experienced the living God in many ways as a young person. I committed my life to God and was baptised at 14. I was fervent in my faith until the age of 17. As I reached my later teenage years I didn’t rebel in the usual sense of the word. I worked hard and respected my parents.

My life looked different to my non-Christian friends in some respects, but it was blurred in others. When I look back, although I wouldn’t have said so at the time, I was selfish and intolerant. I started to compromise and lived my life like I was in charge rather than God. I had continued to be involved at church but had become increasingly apathetic about talking to God.

I graduated from university and seemed to walk into the career I’d always wanted, being offered a job as a