The atmosphere in the operating theatre was tense; the staff knew the prognosis but remained professional. This was it. Helen and Richard Winter braced themselves to say goodbye to their baby.
Seven months earlier at her first antenatal scan, Helen had watched the nurse methodically spreading gel over her tummy. This would be her and Richard’s fifth child – and they were excited about seeing the 3D image of their new baby on the monitor. At the time, they had no idea of the roller coaster ride of emotions that awaited them. Carefully the nurse studied the outline of the baby’s head and neck; she took some measurements and then disappeared. When she returned her expression was serious – tentatively she explained that there was a one-in-three chance that the baby would have Down’s syndrome. Richard and Helen digested the news. And then they smiled, calmly. The nurse explained how the probability statistic worked, obviously concerned that they hadn’t understood. But the news was no surprise to them. “It seemed like a piece of jigsaw slotting into place,” explains Helen. “I’m a speech and language therapist and I’d done some work in a special needs school and I felt really drawn to children with Down’s syndrome. I asked God why, and wondered what I was supposed to do with this, if anything.” “I had a friend at work who was horrified,” continues Helen. “She said that she wouldn’t be able to cope with it and how awful and what were we going to do?" And Richard adds: “I told people at work that we were prepared for a baby with Down’s syndrome. Our reaction wasn’t what people were expecting. The Down’s syndrome association support material said, ‘You are probably feeling anger, shock and sadness right now,’ – and we weren’t!”
Yet, a few weeks later, at a follow-up appointment with Mr Mark Selinger, the consultant in foetal medicine, Helen was given news she wasn’t prepared for at all. The doctor quietly explained that the baby was likely to develop some serious problems; it had a one-in-three chance of not surviving the next month. Helen cried while Gill, who’d accompanied her to the hospital, tried to ask the right questions. An emotional week followed. As Helen struggled to come to terms with the news that this new life within her may end before it even began, she felt God speak to her. As she turned to her Bible, verses from the Psalms, and Isaiah 42:16 gave her the encouragement she needed: ‘I will turn the darkness into light before them and make the rough places smooth.’ “I felt we were blind in this situation,” says Helen. “We couldn’t see what was ahead. We didn’t know where we were going but God would make it light and smooth. “I knew God’s peace to an amazing degree. I felt that our baby probably did have Down’s syndrome but that God was ‘keeping him from all harm’ (Psalm 121:7).”
In spite of the doctor’s prognosis, the baby clung on to life. At the 20-week scan, Helen and Richard waited patiently as Mr Selinger scanned every inch of the baby’s body, checking for major organ defects. The doctor confirmed the baby probably had Down’s syndrome and reassured them that there were no life threatening problems – the good news they were hoping for.
“God had prepared us for our special baby,” explains Helen. “We felt the baby would be a blessing to our family and would honour God – I felt excited and ready to fulfil this calling.”
And with the comfort of the doctor’s words, peace from God, and a 24-week scan that gave them no further cause for concern, the next few weeks were a time of restful anticipation. Helen finished work, she felt healthier than she had in a long time and began to prepare for the baby’s arrival.
But this period of tranquillity was short-lived. At the previous scan the doctor had booked an appointment for five weeks later – he wanted to monitor the baby’s progress. So, at 29 weeks, Richard and Helen went to the hospital for what Helen believed would be a routine check-up. As Mr Selinger carried out another thorough examination, he stopped suddenly and rested a hand on Helen’s arm. Nothing had prepared them for the doctor’s next words. He told them that, even if the baby survived the pregnancy, it wouldn’t survive once born – his lungs weren’t developing properly and there was a build up of fluid in his lung cavities.
Helen and Richard were devastated. The doctor offered them a termination believing that, either way, this baby was going to die. “One thing that hugely helped,” says Helen, reflecting on this offer, “was knowing that it wasn’t our choice to make whether he lived or died. To have that pressure to make that choice would have been so awful.”
Mr Selinger quickly realised that a termination was not an option for them, and they didn’t experience any pressure to consider it. But, as Richard explains, this isn’t always the case: “We are aware of other couples who’ve had an initial Down’s syndrome test and they’ve been under a lot more pressure to terminate the pregnancy. In some cases, the attitude has been – well, it’s a Down’s baby, get rid of it.”
“I thought, God you’ve said this is in your hands, and we’re just going to have to wait,” continues Helen. “And it wasn’t easy. It was awful, but there was no other option.”
Exhausted with sorrow
For five weeks, Helen and Richard lived with the knowledge that their much-anticipated special baby was going to die. Helen shut herself away at home, close to tears much of the time and afraid of seeing people in case their innocent questions provoked more emotion. And then there came the painfully grey afternoon when they had to tell the children. “We suggested an element of uncertainty when, in fact, we had been given no such glimmer of hope,” says Helen.
“I felt like I was carrying a dark and tragic secret – instead of the anticipation of the joy of life, I was carrying death within me. I was exhausted with sorrow and anxiety and fearful about the process of delivering and losing our baby.” And then the doubts crowded in – had God really said that he would keep their baby from all harm? What about the pull Helen had towards children with Down’s syndrome – it looked as if their initial understanding of the situation had been wrong.
A week later they reluctantly went back to the hospital for another scan; it drew an even greater darkness over their lives. The baby’s condition had worsened andhe was deteriorating rapidly. He would probably only last a few more weeks. “I had run out of words to pray,” says Helen. “Mostly all I could do was whisper Jesus’ name, or place Benjamin into his hands. I didn’t feel like I was clinging onto God, rather that I lay in a crumpled heap at his feet.”
“We were already beginning to grieve,” shares Richards. “And we were trying to keep going and that was extremely tough. I got to the point where I could pray that God would look after him, that he wouldn’t be in any pain and that he wouldn’t suffer. I’d kind of given up. It just seemed so bleak.
But people were praying – friends, relatives, friends of friends.
Then there came some unexpected news that provided a small glimmer of light: “He doesn’t seem to have deteriorated at all in the last two weeks,” said Mr Selinger, with a hint of surprise, at the next appointment. Yet, the outlook remained critical. The doctors would try to resuscitate him on delivery, but there were no guarantees, no statistics – it may work, it may not. They didn’t know if he would have enough lung function to breathe on his own, but they would try.
So Helen and Richard returned home, still waiting, uncertain of what the outcome would be, yet knowing that it didn’t look promising. And then, as the routine at home slipped back into a more normal pattern – family meals were prepared, homework was completed, relatives visited – Helen felt small stirrings to pray for a miracle. One evening a group from their Church met to pray. What should we pray for they asked? Gently, Helen and Richard asked them to pray for a miracle. And Helen added a request that the baby would be born at the right time. At 2am that night Helen’s waters broke. They made their way to the hospital where established labour held off until dawn and the arrival of Mr Selinger at 9am. The baby was in a breach position and the doctor explained that a Caesarean would give him the best possible chance. Yet he hesitated – he still believed the baby wouldn’t survive so he carefully asked Richard and Helen if they wanted to go through with major surgery. “Yes,” they replied tearfully.
The day arrives
Fifteen staff gathered in theatre, ready to perform their roles – this was it. They braced themselves to say goodbye. As the baby was delivered he was whisked away to a table in the corner. Paediatric staff crowded round him, urgently. But then surprisingly, unexpectedly, the tension was broken by the sound of small squeaks. And then a voice said, “His heart is beating well and he’s breathing!” No intervention was necessary. He was breathing all on his own.
Mr Selinger strode over to Richard and gave him a crushing handshake. The nurses attending to Helen were delighted, “This is just so amazingly different to what you were expecting, isn’t it?” they exclaimed. “We couldn’t believe it,” confirms Helen. “God had really done it – we had our miracle. We cried and kissed him and cried again and poured out our thanks to Jesus.”
For the first two or three days after Benjamin was born he went through a series of tests and scans to check how he was developing.
“The doctor was scanning everywhere,” says Richard, “checking what might be an issue. He was getting more and more delighted that there weren’t any of the complications that they thought there might be.”
“I remember him leaning over Benjamin and frowning and saying ‘most surprising,’ then looking up at us and smiling,” says Helen. The only cause for concern was a small hole in the heart, which is so tiny it’s almost disappeared and an enlarged kidney, which is now normal size and functioning well.
A different view
Baby Benjamin is now 10 months old. He sits happily on Helen’s lap, occasionally making gurgling noises, or smiling so broadly that we all stop and smile broadly back. The other children wander through the lounge, giving him a kiss or a cuddle as they walk past. Helen places him on his play mat where he lies and fidgets and gazes up at the toy animals hanging over his head. Having Down’s syndrome means that he will develop more slowly than other children his age. “He is going to struggle to learn some things and hemay be more dependent on us than the other children. Well, that’s just the way he is,” states Richard.
“One person said, can we pray for the Down’s syndrome to go away, can he be healed of that? And that is completely not where we’re at. It’s an integral part of him and that’s what he’s like and it’s not an issue.” As Helen muses on the whole experience, on the ups and downs, and now watching the wriggling, laughing life in front of her, she says: “I’ve learnt overwhelmingly how much God loves us, and that he really does want to intervene dramatically in our lives,” she pauses.
“God’s whole agenda completely inverts the way the world looks at things. God’s got a different view to many people who may consider a life might not be worth living. He chooses the foolish things of this world to shame the wise.” “It’s a miracle that Ben is here,” continues Richard. “God decided to put him here so the rest of his life isn’t going to be an accident – God has a plan for him. And it’s all going to be part of the same story.”
Facts about Down’s syndrome
Everyday in the UK between one and two babies are born with Down’s syndrome. Down’s syndrome is a genetic condition caused by the presence of an extra chromosome.
People with Down’s syndrome all have a certain degree of learning disability. It is impossible to tell at birth what that degree will be.
Most children with Down’s syndrome learn to walk and talk, ride a bike and read and write – to do most of the things other children do.
About one-in-three children born with Down’s syndrome has a heart defect. The life expectancy for a child with Down’s syndrome is 50-60 years.
Fiona Campbell is deputy editor of Christianity magazine.