Published by Hammond House London, 2022. Survival Anthology.
Beginning at the End
‘Do you have everything?’ Sarah asked her patient who was being discharged from the maternity unit.
‘Yes, everything, except what I came for.’
Almost everybody knows somebody who has lost a baby, and the loss of each baby affects countless people.
Unless you have been in this situation, the devastation caused by losing a baby can only be imagined. The woman never forgets her loss, because the mother already knows her baby, by the changes to her body, by the baby’s movements and by its kicking.
Forty years’ experience as a practising midwife battling bureaucracy, combined with years of mindfulness and meditation, helped Sarah to support parents, families and friends of babies who died at her hospital.
The onset of labour is akin to entering a dark tunnel. The woman expects there will be light at the end, but for some that light does not deliver the precious gift of a healthy new baby.
The Cold Room
Sarah picked up the phone. ‘Clinical Manager, Sarah speaking.’
‘Hi, Sarah, we’ve had a twenty-three-week baby, who passed away half an hour after birth. The parents are ready to let the baby go to the mortuary. Are you available?’
It was a call from a fellow midwife that always needed Sarah’s full care and attention. She braced herself for the task ahead. Part of Sarah’s job was to take dead babies to the mortuary or retrieve their bodies from this cold room and take them back to parents in their hospital room. This request could come at any hour, on any day of the year. Sarah cleared her throat. ‘Is your patient staying overnight?’
‘Yes.’
‘Have you reminded her she can ask to see her baby anytime while she’s here?’
‘I have,’ the midwife assured Sarah, ‘and I also let her know that after she goes home, she may still return to the hospital during the day to see her baby.’
‘Thanks.’
‘My patient said if she does return, she’ll probably bring family members and friends with her.’
Sarah said, ‘They’re all welcome.’
Rita and John. 1
Before she became the Clinical Manager, Sarah had worked many years in the labour ward of the birth centre. She knew well the many life-threatening complications that can happen during birth. Sarah vividly remembered the first woman in premature labour who she cared for: Rita and husband John.
‘You may bring your patient who’s in premature labour to the birth centre,’ Sarah said, on the phone to the midwife in the emergency department. ‘Her room is ready, I’ll meet you at the front door.’
‘On our way.’
Sarah felt her stomach tighten. When the patient and her husband approached the entrance to the birth centre, Sarah pulled in her shoulders.
The glass doors swung open.
‘Hello, Mr and Mrs Jones,’ she began sombrely, ‘I’m Sarah and I’ll be caring for you today. I’ll take you to your room.’
‘Thanks, Sarah, please call me Rita, and this is my husband John. I think I’m getting a contraction.’
‘Let’s wait till it passes,’ Sarah said, putting her hand on Rita’s shoulder. ‘How often are the contractions coming?’
‘About every five minutes.’
‘What time did the contractions start?’
‘About three hours ago.’
‘What time did your waters break?’
‘An hour ago and the contractions are getting stronger since then,’ Rita said, wiping tears from her eyes.
‘Are they lasting longer each time?’
‘Yeah, they are, but this contraction is going now.’
‘Right. Let’s get you to your room before the next one.’
Sarah accompanied the couple down the corridor to the delivery suite. ‘This will be your room.’ Sarah led them inside and briefly explained the layout of the room.
Rita sat on a chair while John looked around.
Sarah faced Rita. ‘Do you understand you’re in premature labour and your baby will be born within a few hours?’
‘The doctor told us that in the emergency department,’ Rita replied.
‘This room is away from the noise of the main birthing area. It’s bigger and closer to the desks of the midwives and doctors. If we need extra help or equipment, we can get it quickly.’
‘Oh, thank you, that’s great to know,’ Rita said.
‘I understand the doctor also explained to you that your baby may only live a short time – minutes perhaps. Do you realise that?’
‘We were told that.’ Rita grasped her husband by the arm, they folded into an embrace, and she wept on his shoulder.
John added, ‘But we won’t know until after he’s born.’
Rita struggled to say through her tears, ‘We were looking forward to welcoming our new, healthy baby in a few months, not a baby born this early.’
‘Don’t blame yourself,’ Sarah said.
‘I don’t know why I came into labour now, I didn’t do anything wrong or take any risks to cause this.’
With a reassuring tone, Sarah said, ‘We don’t always know why some women come into labour prematurely, but we may find out after your baby is born.’
Rita sobbed. ‘Thank you for saying that.’
Sarah moved closer to her patient. ‘Let me help you undress and get you to bed.’
John helped Sarah shift Rita onto the delivery bed.
Between contractions, Sarah asked, ‘Do you have any special request for a ceremony, baptism, naming or something else for your baby?’
‘Not yet,’ John replied. ‘We’ll wait and see how our baby is after he’s born.’
Sarah understood that John was in denial, thinking the baby might live. However, their baby was so immature, survival would be almost impossible. Sarah knew the likely complications that lay ahead, and how she would use this precious time and her skills to help Rita and John deal with the situation. ‘Let’s see how things develop, but right now we need to take care of Rita and help her to cope with her labour. We want to make sure your wife is comfortable and help to reduce her pain and anxiety as much as possible.’
‘Yes, of course, of course,’ John replied, as he hastened to help Sarah with Rita.
Rita and John. 2
‘Can we use candles and pictures from our faith?’
Any support for the parents is encouraged. The midwife’s scientific and clinical training welcomes all faiths or no faith. It can be a couple’s salvation from the raw emotions that follow if they lose their baby, when the joys and hopes of pregnancy can quickly turn to despair. ‘Of course,’ Sarah replied. ‘However, we can’t allow naked flames because with all the medical gases in the room a candle could start a fire.’
‘I see,’ John said.
‘Fortunately, we have a lamp with a closed light. Will that work for you?’
‘Thanks, that’d be great.’
‘Is there anything else you would like?’
‘Are we allowed to play music?’ John asked.
‘Yes, and we have a compact disc player. Did you bring any discs?’
‘Right here.’ John slipped a CD from his jacket into the machine. Some calming music filled the room.
‘Nice choice,’ Sarah said, with a smile.
‘What can I do to help?’ he asked.
‘If you like, you can stand or sit at the side of the bed and massage Rita’s back during contractions.’ Sarah leaned down to demonstrate and put her hands on Rita’s lower back. ‘Move your palms in circles like this and ask Rita if that’s helping. She’ll tell you if it is.’
‘Definitely soothing,’ Rita said.
‘That’s good,’ John said, as he took over from Sarah.
Sarah brought over two more things. ‘John, between contractions you can take this wet facecloth and wipe Rita’s face, then refresh the cloth in this bowl of warm water.’
‘Okay,’ John replied, ‘in between contractions.’
‘Women use lots of energy in labour and lose water sweating,’ Sarah continued. ‘So, as well as wiping Rita’s face, it’s important to give her regular sips of water too – but no sugary sports drinks.’
John nodded. ‘Got it.’
‘I need something for this pain,’ Rita cried. ‘I can’t cope with all this.’
‘Your labour is progressing quickly,’ Sarah said. ‘Would you like to try using the gas? It’ll help your pain.’
‘Good, good, good,’ Rita replied.
Sarah moved to the opposite side of the bed, then attached a breathing mask to a flexible pipe coming out of the wall. She quickly set the levels. ‘Rita, are you ready to use the gas?’
Rita nodded feverishly.
‘You hold the mask and when you feel a contraction starting, put the mask over your nose and mouth, then take short quick breaths in and out through your mouth. Take the mask off when the contraction is gone. I’ll be right here beside you, to help.’
‘Rita, would you like a sip of water?’ John asked.
‘Not nooowww …’
Sarah looked Rita in the eye. ‘Your baby will be born soon.’ Sarah pressed the buzzer by the side of the bed.
Almost instantly, a second midwife came into the room.
‘Please set up for delivery,’ Sarah said.
‘Do you need a paediatrician?’ the midwife asked quietly.
‘Yes, the pregnancy is twenty-three weeks, but we’re not sure of the baby’s size.’
‘Understood.’
Sarah turned back to the couple. ‘Rita and John, your baby is about to be born. I can see the baby’s head. Rita, I’ll tell you when to push and when to breathe.’
The paediatrician arrived and set up the resuscitation equipment.
It only took a matter of minutes for a small, limp, pale baby to be delivered.
Sarah noted the time of birth. She felt her heart sink as she handed the tiny baby boy to the paediatrician, who took him to the heated resuscitation table. With the absence of that first lusty cry of a healthy newborn, the atmosphere felt like stepping out of a warm bath into a winter chill.
The baby’s heartbeat was slow and irregular. His Apgar score, which measures the baby’s vital signs, was two out of ten at one minute after birth.
‘Do you have a name for your baby?’ Sarah asked.
‘Matthew is his name,’ Rita replied.
The doctor administered oxygen to Matthew and attempted to resuscitate him.
At five minutes, the Apgar score had not improved. Matthew was not responding. He was not breathing on his own and had no reflex actions. The paediatrician continued to resuscitate the baby for twenty minutes. She then confirmed the decision: Matthew, at twenty-three-weeks’ gestation, weighing 330 grams, was classified as Extremely Low Birthweight and unable to survive.
Sarah wiped the baby’s face and wrapped him in a blanket. She put Matthew into John’s arms.
‘My beautiful son, my lovely Matthew,’ John sobbed loudly, looking into his baby’s face. ‘Why did this happen? We wanted you so much, now we’ll never know you. Why did this go wrong for us? I don’t want to say goodbye to you, my precious boy.’
Rita watched on, unable to speak as her tears cascaded.
‘I can’t live with this grief,’ John wailed, holding out Matthew to Sarah.
Sarah took Matthew from John’s arms.
‘My stomach is churning. I think I’m going to be sick,’ John said.
‘Would you like to go out of the room?’ Sarah asked.
‘No,’ he replied, wiping his nose and eyes with his handkerchief.
‘Please let me take him,’ Rita cried, stretching out her arms.
‘Let’s sit you up first,’ Sarah said, and gestured for the midwife to help Rita.
The midwife propped up Rita with a pillow.
Sarah began unfolding the blanket bit by bit to show Matthew to his mother.
‘I am so sorry, my little boy,’ Rita wailed, as she took Matthew into her shaking arms. She kissed her son on his forehead. ‘What did I do so wrong to lose you like this?’
For a moment no one could speak.
‘He’s very small,’ Sarah said, in a quiet voice. ‘You may hold him next to your skin, if you wish.’
Rita leaned back slightly and gently positioned her son on the top of her chest.
Sarah said to John, ‘Perhaps you’d like to come and lie on the bed beside your wife?’
John took his shoes off and shifted onto the bed next to Sarah. As the parents hugged each other with their baby between them, Matthew passed away peacefully.
The fallen miracle.
When the time seemed right, Sarah said to the couple, ‘Take as much time as you wish, and when you’re ready, I can put your baby into the cot.’
If parents choose not to see their baby, they have no visual memory; however, if they do look at and hold their baby, that little face will always be remembered. Most parents ask to see and hold their dying or stillborn child.
Parents usually cuddle their infant for a considerable length of time, even when the baby is stillborn. The midwife’s dilemma is whether to encourage the parents to hold their baby, or not. And when to suggest the baby should be taken from the parents: before the baby dies, or after death. Of course, it would seem like the mother’s choice should prevail, but a midwife can be held responsible either way.
Reactions cannot always be predicted:
‘You should have let my baby die in my arms,’ one mother might say accusingly.
‘Why didn’t you take my baby away before he died?’ another might cry.
The memory of a baby passed becomes more important across the weeks that follow while the parents try to recover from the experience of a childbirth for which they were not ready, compounded by the loss of their newborn. Parents need a trusted person to listen to them and help them with their questions and concerns about their loss.
Rita and her Mother. 1
‘Are your family here?’ Sarah asked John.
‘Rita’s family is here and mine are on their way.’
Sarah looked at Rita. ‘Who would you like to come into your room?’
Rita didn’t need to think about her reply. ‘My mother.’
Sarah looked at the midwife who was assisting. ‘Please go to the waiting room and ask Rita’s mother if she would like to come in.’
Outside in the waiting room, the midwife was met with a group of nine people sitting with their heads bent, hands clasped in their laps, in deep prayer that was being led by the baby’s grandfather.
The midwife’s instinct was to step back and allow them privacy.
However, an older woman stood up and walked towards her. ‘I’m Rita’s mother, grandmother of the baby. May I help you?’
‘Yes, Rita has asked for you in the delivery suite.’
‘Is the baby born?’
‘If you could come with me, we’ll talk about it in Rita’s room.’ The midwife led Rita’s mother down the corridor towards the delivery suite, then opened the door.
Rita’s mother went straight to where her daughter was holding her lifeless child. She realised what had happened. ‘Ohhh, Rita, I’m so sorry.’
Mother and daughter wept in each other’s arms, while Matthew remained on Rita’s chest.
After some long moments, Rita lifted her son from her chest. ‘Mum, look at him.’
Rita’s mother caressed her grandson’s head, her face pained with heartbreak.
‘He looks so perfect,’ Rita said.
Rita’s mother gently took Matthew into her arms. ‘He does and he always will be perfect.’
Neither woman was crying now, they looked calmly at the baby, a momentary ebb in the tide of emotion, reflecting on what could never be.
‘I’ll leave the room to give you some family-time together,’ Sarah said gently. ‘Please press the buzzer if you need me. I won’t be far away, just at the desk. But I’ll need to come into the room regularly to check on Rita.’
Rita’s Mother nodded. ‘Thank you, we just need a little time.’
‘Of course.’
Rita and her Mother. 2
A short time later, Sarah came back into the delivery suite, and asked, ‘Rita, would you like your mother to help wash and dress Matthew?’
Rita’s mother took a deep breath and turned to Sarah. ‘This is the only time I will ever wash or dress my little angel.’
Rita lay in bed and watched her mother wash Matthew while Sarah assisted.
When they were finished, they placed him on a fresh white towel and patted him dry, being careful not to damage his fragile skin, then put him into his cot.
Rita’s mother said out loud to herself, ‘Any person can bathe a healthy smiling baby at home, but I have been given a gift from heaven – to bathe my grandson in the room where he was born and died.’
Baby Clothes
‘Did you bring any clothes for Matthew?’ Sarah asked.
‘Yes,’ John replied, ‘they’re just in this bag over here.’ He went over to the bag and brought it back for Sarah and Rita to see. However, when he pulled out a little white jumpsuit, it was obvious the size was too big for Matthew.
Sarah looked tenderly at John, and asked, ‘Would you like to choose smaller clothes from our store?’
An army of volunteers donate their time to the hospital by making or knitting clothes for babies who die. They use patterns of dolls’ clothes for babies who are lost as early as sixteen weeks’ gestation, right through to term. These tiny clothes are arranged in see-through packs: a cotton dress, cardigan, hat, booties and shawl. A small toy or teddy is often attached and may be buried with the baby or kept by the family.
Sarah lifted Matthew from the cot and placed him on the bed.
Rita’s mother picked up a tiny white dress with fasteners down the back and caressed it before whispering a prayer and gently dressing the baby.
Memory Folder
‘When a baby passes away, we usually make a memory folder,’ Sarah said to the family. ‘If you wish, I can make it here in the room.’ She held up a small pale blue book with clouds on the cover.
‘What do you put into the folder?’ Rita asked.
‘First, I’ll take photographs.’ Sarah pointed to a Polaroid camera on a nearby table. ‘Would you like to hold your baby for some of the photos?’
Many parents find this decision difficult. The mother doesn’t want to be photographed in her time of distress, but she knows this is the only time these photos can be taken.
Rita’s mother gently asked, ‘I have a special family memento to put on Matthew until he is buried. Will that be alright?’
‘Of course,’ replied Sarah.
Rita’s mother reached into her bag and took out a silver medallion on a fine chain. She carefully placed the chain around the back of Matthew’s neck and positioned the medallion face-up on the middle of his tiny chest. The inscriptions were religious, as with most mementos that families choose.
Sarah picked up the camera and took several photos with Rita holding Matthew, then other shots that included Rita’s mother and John.
When she had finished, Sarah said, ‘I’ll make prints of Matthew’s hands and feet, if you wish. There are pages for these in the folder marked left and right.’
Rita caught her breath and nodded.
‘Thank you,’ John added.
Sarah understood how hard this was for them. She produced a small ink pad and applied it to Matthew’s hands and feet before making his priceless prints on the thick pages of the folder.
‘Would you like to snip a lock of Matthew’s hair?’ Sarah asked, offering John a pair of scissors.
‘He doesn’t have much hair,’ John said, fighting back tears. He took the scissors, leaned into the cot and carefully cut a piece of his son’s hair. ‘Will this be enough?’
‘Any amount will do,’ Rita said.
John placed the lock of hair in the folder.
‘There are some other items of clothing that you might like for Matthew,’ Sarah said. She gave Rita a little white hat for Matthew’s head, then offered two little white booties to Rita’s mother to put on his tiny feet.
Sarah took a few more photographs and noticed the family was a little more relaxed.
Finally, Sarah said, ‘I’ve noted all Matthew’s details, including the date and time of birth and death, his weight, and his sex.’ The folder was now complete, and Sarah offered it to the family.
‘Thank you,’ they replied.
‘Store your folder at home. Take it out when you wish and look through the pages. It may help you recover from the loss of your baby.’
If parents prefer not to accept the memory folder, it’s put into the mother’s medical history. Parents have returned years later and asked for it.
Matthew was wrapped in a small white shawl and placed into Rita’s arms for one last cuddle.
Butterfly
Outside the room, Rita’s mother turned to Sarah. ‘It was such a privilege to have been included in this way. I didn’t think I’d be allowed to be so involved. I thought the nurses and doctors would probably take care of things in another room, but now I can explain to my family and friends the tenderness shown to Matthew at this sad time. I’ll always remember your kindness to our family and dedication to your work as a midwife.’
‘Be sure to keep a watchful eye on Rita and John,’ Sarah said. ‘Spend time with them, listen to their stories, their worries, and work through their questions with them. Go out for walks together. They need to see that life continues and they’re still part of it. This will help them to recover and come to terms, in some way, with their loss and help them see a future beyond this closed door.’
‘I will now that I understand what needs to be done to help them.’
‘Help is available at this hospital and they should think about accepting it. We have counsellors, and a special midwife who works with families after they lose their baby. We’ll give Rita and John some brochures and information before they go home. Encourage them to telephone the hospital and make an appointment.’
‘Thank you, but what about you?’ Rita’s mother asked. ‘How does this affect you? Will you be alright?’
‘Counselling is available for staff too. We have debriefing sessions with the psychologist and senior staff,’ Sarah assured her. ‘Accepting losses and coming to terms with grief helps us realise that, in this life, there are forces beyond our control.’
Parents staying overnight were offered a private room. A butterfly was placed on the outside of the door to alert all coming to the room that the baby had passed away.
Post-Mortem
Back in the delivery suite, Sarah said to Rita and John, ‘I’ll phone the pathologist and pass on your request for a post-mortem.’
‘But it’s Christmas morning. Will someone be available?’ Rita asked.
‘It’s not a public holiday for us,’ Sarah said. ‘We’re on duty every day of the year.’
Sarah left the room and went to a phone at the nurses’ desk to ring the pathologist.
‘Good morning, Doctor. It’s Sarah from the birth centre. I’m sorry to disturb you, but we need a post-mortem, please. And the parents would like their baby to be buried within twenty-four hours of death.’
‘I’ll come straightaway,’ she replied.
‘Thank you,’ Sarah said. ‘I appreciate the timing’s not great and you’re probably doing things with your family this morning.’
‘Part of the job,’ she said. ‘You’re working Christmas too. The parents didn’t choose when their baby would be born. Nor did the baby choose the time to die.’
‘Thank you for being so understanding.’
‘Where’s the baby now?’ the doctor asked.
‘In the mortuary.’
‘I’m on my way.’
Sarah’s hands were trembling when she hung up the phone.
Help to Say Goodbye
A baby might not die in the delivery suite. If their condition is ‘not compatible with life’, then the child will be unable to live in a meaningful, independent way.
If a baby is kept on a ventilator, the parents often choose to believe he or she is still alive and well, and one day will emerge in a condition where their child can live a normal life. It can take hours, weeks or occasionally months for some families to come to terms with this dilemma.
Following counselling sessions with medical and nursing staff, psychologists, pastoral care workers and family, most parents find a way to accept the situation, and to let their baby die, rather than prolonging the baby’s pain and suffering. Sometimes a ceremony will be arranged for family and friends.
A hospital might not have a specific person to organise a farewell ceremony. A capable staff member might be asked to perform this extra duty. In her current role as Clinical Manager, Sarah was usually the staff member asked to set up these occasions.
The Garden
The nurses who cared for baby Paul led the procession. They wheeled him in his open cot through the large doors and into the open air of the garden. Patients, their families and visitors often used this relaxing space, which was set in the centre of the seven-storey hospital. This sunny afternoon, however, the slow-moving procession into the garden was the prelude to a funeral.
Close behind the nurses was a ventilator on a trolley, from which a tube was attached to keep baby Paul alive. Following were Paul’s parents. Last was the priest, wearing his clerical collar, a black cassock and around his neck was a green stole.
Family and friends of Paul’s parents were already scattered around the garden. Their children, dressed in pretty frocks and outfits, stopped their playing when they saw the nurses entering. Two security officers stood at a discrete distance.
‘What’s happening?’ asked a patient, who was sitting with her partner enjoying the sunshine-filled garden.
‘Parents are farewelling their baby,’ Sarah replied.
‘What do you mean “farewelling”?’ asked the woman’s partner, who stood up and stared at Sarah.
‘The baby is dying,’ Sarah said.
‘Why is the priest here?’
‘To baptise the baby.’
‘And then what?’ the woman wanted to know.
‘The machine keeping him alive will be switched off.’
‘Will the baby die?’ the first patient asked.
Sarah hesitated, then said, ‘Yes.’
‘Why is he just left to die? Can’t they keep him on the machine?’
‘He won’t be just left to die, he’ll have palliative care,’ Sarah said in a low, sad voice. ‘Because he can’t be left on the machine forever.’
A small group of patients had started to gather around Sarah.
‘A baby in palliative care?’ one of the patients asked. ‘Does this happen often?’
‘Some babies can’t survive on their own,’ Sarah replied.
‘Are we in the way?’
‘No, no.’
‘Should we leave?’ another patient asked, looking towards the door.
‘There’s no need to leave,’ Sarah said. ‘The family understands there may be patients and visitors in the garden.’
‘Are ceremonies often held here?’
‘Now and then,’ Sarah said. ‘We’ve come a long way in the past forty years. The changes haven’t come easily, but this hospital tries to meet all reasonable requests without causing any upset to other patients’ enjoyment of the garden.’
Another question was more pointed. ‘And the hospital is happy for so many people to be part of the ceremony?’
‘Yes, but each case is considered separately.’
‘Fair enough,’ someone added.
It was time for Sarah to organise the onlookers. ‘Please sit down, everyone. I’ll be here in the garden if anyone needs me, or if you find it too disturbing.’
All the patients found somewhere to sit. A woman in a wheelchair changed her position to have a better view. She wasn’t going to miss out.
The ceremony began and all the bystanders fell silent.
Father Flynn baptised the baby, then led family and friends in prayers for the dying. The group in the song, Swing low, sweet chariot.
Eventually, the nurse caring for the baby leaned across and switched off the ventilator.
Giving birth to a sick baby with a poor prognosis is like watching ice-cream melting in the sun: parents stand and watch helpless, while before their eyes their cherished hopes and dreams disappear.
Reality infused with sadness reminded Sarah that in some way this is what awaits each one of us.
With a shaky voice and through her tears, the mother said, ‘Thank you to the staff for their care and attention to our baby Paul during these weeks of his short life. You have helped us to cope and we’ll always remember this special time. We hope when we meet next, it will be a happier occasion.’
Paul’s father added, ‘Thank you, Reverend Flynn, for giving up your time this afternoon to come to baptise and name our baby.’
Reverend Flynn nodded solemnly.
The mother looked around the garden and said, ‘Thank you to our family and friends who are here today, and to those who sat with us beside Paul’s cot, to help us keep watch. We invite you all, including your children, to come and release a balloon and say goodbye to our beautiful baby.’
During the goodbyes, Sarah moved towards the edge of the garden to escort the priest out. Many of the patients and visitors now wore pleading looks and some were shedding tears. As she passed them, Sarah patted shoulders and touched outstretched hands.
Witnessing the death of a baby may make some people fearful of the risks of childbirth. But most couples choose the zip-liner ride of life with a child, rather than the calm, comfortable life inside an empty house.
Sarah suddenly stopped and looked up at the seven storeys of hospital windows above. Her eyes opened wide and her jaw dropped in disbelief. Faces of staff, patients and visitors were pressed up against almost every window, on every one of the seven floors, watching the proceedings. The ceremony had captured the attention of hundreds of people.
The loss of a baby touches the lives of many.
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