Only God knows what the future holds
13 MINUTE READ
After the gasps, there was no noise in the delivery room. Everyone had gone dead quiet and stared wide-eyed at the child who had just been delivered.
The obstetrician’s body obscured what the paediatrician could see but his movements spoke of worry and haste. She knew something bad had happened.
The obstetrician whisked the infant away from the mother and over to the paediatrician.
The paediatrician waited at the resuscitaire, equipment primed, drugs ready. This mother has had little obstetric care. On admission the obstetrician knew something was not right so he had called for a paediatrician to be present at the delivery. The paediatrician knew to expect problems when she was called. She had introduced herself to the parents.
Nothing could prepare the doctor for the child placed in front of her. This child had one of the most severe disabilities she had ever seen. It looked as if someone had cut from the umbilicus, all the way down, and laid the infant open. The paediatrician quickly checked. Cloacal extropy, spinal bifida and absent large gut. The infant’s legs flopped out at the sides from a flattened pelvis. The sex was unclear. From the waist up the child was beautiful. The paediatrician wondered how much resuscitating she should do but nothing was necessary, the infant cried and cried lustily, without any need for intervention.
Carefully, she wrapped the child in a bunny rug and carried the infant over to the parents. “Hello,” she said. “You have a beautiful child but I’m afraid we have some serious problems here.” She laid the bundle in the mother’s arms and saw the moment of bonding occur as she had many, many times before.
“Hello, little one,” the mother said as she stroked the baby’s head.
“Is it boy or a girl?” asked the father as he held the infant’s hand. The tiny fingers wrapped around his calloused finger.
“I’m not sure yet but we will test, and this child will be one or the other,” the doctor said. “The baby has some very serious problems. I can show you and explain.”
“Carefully, the doctor pointed out what was obvious. There may be more problems that they could not see.”
Carefully, the doctor pointed out what was obvious. There may be more problems that they could not see. The sex of the infant was not obvious. She would have to do more tests. She wasn’t sure if closure was possible. Infection was a serious risk.
“What happens now?” asked the father.
“We can send the baby to the city, to the Children’s hospital, though I’m not sure what they can do. Or we can make the baby comfortable here, to spend what life they have left loved by their family. There is no rush. Take your time to make up your minds and I will be here to answer any questions if I can.”
The doctor phoned the tertiary hospital who recommended the latter alternative.
The paediatrician was deeply troubled. That night she opened her Bible looking for direction. “To each is given the manifestation of the Spirit for the common good. Just as a body, though one, has many parts, but all its many parts form one body, so it is with Christ” (1 Corinthians 12:11-12). She knew that the love that Jesus showed in dying for her also belonged to this child, making this child and their family part of the body of Christ. This child was as much a part of that body as she was, with its own set of talents.
“If one member suffers, all suffer together. If one member is honoured, all rejoice together” (1 Corinthians 12:26).
She asked God to give her guidance and to empower the parents to make the right decision for them.
The doctor and the parents talked often. Family came to visit. They looked at the infant, now in a humidicrib receiving basic treatment, trying to hide their shocked faces. They said, “you poor thing” and looked away quickly. Staff came to gawk, the infant was fast becoming a gruesome side show.
The parents, now holed up in a single room, couldn’t sleep and spent most of their time hugging each other, somehow willing things to be different. Gradually, they reached a decision on their own terms. The child, genetically a girl, was named Joanna, “gift from God”, and plans were made to give the child a chance. The father asked the paediatrician, “Why did God make my child suffer?”
The paediatrician silently asked God to give her the right answers and slowly she delivered them. “God is good. He did not make your child suffer. Bad things happen in man’s world. This is not your fault. God gives us strength to keep on going. He will give you the strength needed, too. I’m not sure if your baby will survive, but God knew this baby in the womb and has a plan for the future. Only God knows that plan but I will be there to walk beside you.”
Joanna spent 5 months in intensive care. The parents have long since lost count of the number of operations she has had in the many years that have followed and will continue to have. Her parents have remained steadfastly beside her. The paediatrician has had the privilege to share the highs and the lows.
The parents are strong advocates for their daughter and encourage her in everything she does. Amazingly, she walks short distances but will never run. Her mother is active in support groups focusing on change for people with a disability.
Three weeks ago, Joanna performed her first solo singing performance seated in front of a large audience. It was breathtakingly beautiful.
As she heard Joanna sing, the paediatrician’s eyes welled up when she remembered her beginnings. She never expected her future to hold this.
She thought about other children with a disability she had helped to care for. She knew the outcome for some and wondered about others.
She thought of Lily first. Three years ago the paediatrician received the confirmatory pathology results for Lily. She phoned and made an appointment to speak to the parents.
When they were all in her office, seated in comfortable chairs, she started. “I have the results of the tests,” she explained.” I know why your baby daughter does what she does and can’t do other things. She has a problem with her chromosomes.” The paediatrician explained carefully, in greater detail but it was clear that the parents were in shock and no further information would sink in.
She met with them a few days later. They told her that when she called them into the clinic, they weren’t sure why she needed to speak with them but when they left, they felt like they had their legs cut out from underneath them. She had tried to be as compassionate and gentle as possible and arranged for support. She learned later that the father was unable to return to work for three weeks due to his distress. They had to mourn the ideal child of their dreams and come to grips with the one they had in reality.
“Why did God make my child suffer?” the mother asked.
“She is the same beautiful child she was yesterday, we just understand her better today,” the paediatrician answered. “She has been blessed with two wonderful parents and together we will make sure that Lily will live the best life she can, Lily’s life.”
At three years of age their daughter is finally starting to walk, though it is an unusual gait. She has become more visible when the family go to the shops or the park. “It’s funny the reactions we are getting now,” they tell the doctor. “We just see our daughter but they see her with misguided pity. She has a happy life. We love her and she loves us in return. It is just not good to dwell on what might have been when you can enjoy the real Lily, now.”
More children’s faces flash before the paediatrician’s eyes.
Peter has Crouzon’s syndrome. He is exceedingly bright. The paediatrician remembers him arriving at her clinic a few years before. “Hello, dear,” says the clerk, using a higher pitch and speaking slower as if to a much younger, intellectually challenged child. “Is Mummy with you?”
Peter replies, “No, I’m here on my own. I have my Medicare card and am authorised to sign.” The clerk looked shocked. She, like most people, assumed that all people with physical disabilities are intellectually disabled which is far from the case. Peter has just started to work as a nurse. When people get over his appearance, they find him gentle and caring, and considerably more understanding than most.
Samantha has a developmental disability. She loves to skateboard and explains that her mind has ‘sand in its wheels’. She can get to the same places as other people but it just takes her much longer and she has to work harder.
“Why did God make a mistake when He made me?” she asked the paediatrician many years ago.
The paediatrician replied, “God didn’t make a mistake when He made you. He made you for a reason, He has a plan for you, and you are spectacularly special.”
Samantha has just become a teacher and has a special calling to look after children with disabilities. In her words, she just “gets them and they get her.”
Another disabled teenage patient, Neveah, taught the paediatrician something else. “You don’t have to fix everything, doctor”, she told the paediatrician. “Sometimes we just need to be heard and our feelings acknowledged.” The teen taught her to say, “It sucks.” The paediatrician felt uncomfortable to say it at first but found it got easier. A problem shared is a problem spared. Sometimes, listening is all that is needed.
“Riley has autism. He has just won the local photography prize in the adult section.”
Riley has autism. The paediatrician tried to get the parents to counselling but they declined. Sadly, she watched as the parent’s marriage disintegrated, as those with children with a disability often do. Blame of the self or the other by one or both parents is very destructive though the paediatrician stressed that what had happened was no one’s fault. In addition, their child looked normal so no one understood the difficulties they were facing.
Riley has been gifted the most amazing ability, to see what others are too busy to stop to admire. He takes photographs. He showed the paediatrician, with pride, his shots of a child being swung by her father from the father’s perspective and a drop of water as it hits a puddle. They are a snapshot of wonder. He has just won the local photography prize in the adult section.
Mike has trouble speaking. His speech can only be understood by his parents and even then, only some of the time. He paints, usually with acrylics. These are pictures with deeper meaning. He can’t put his feelings into words but he doesn’t need to. Everything is in the paintings – everything.
“Mike has trouble speaking. Everything is in his paintings – everything.”
Over the years the paediatrician has seen children with severe disabilities achieve amazing things
“Why do you do all you do?” her patients and their families ask her.
“I am a Christian person,” she replies. If they ask for more, she tells them. Jesus went out of his way to heal the lame and the blind. People with disabilities were very important to him. He knows them and, He knows their needs.
“Truly I tell you, whatever you did for one of the least of these brothers and sisters of mine, you did for me” (Matthew 25:40).
Perhaps, it is the openness of the paediatrician about her love of God, that allows her patients and their families to also identify as Christians and leads them to ask deeper spiritual questions they might not ask another doctor. She tells them she is not a pastor or a priest, just a humble paediatrician walking with God and shares her thoughts if they ask for them.
Molly has cerebral palsy. When she wears her Frozen princess dress, she feels really beautiful, though the lady in the shop was shocked that she wanted it and thought the dress looked better on “normal children.”
Max likes his superman cape. When he wears it, he can pretend he can fly and be really strong when he has his dialysis.
Becky loves Peppa Pig. She brings her Peppa Pig soft toy into the hospital to hug tightly every time they do her tracheostomy changes.
Billy loves computer games though he has to be a bit more inventive to play them because he has no fingers.
Justin listens to the Wiggles when he has his shunt studies for his hydrocephalus.
They are all children with a disability, not disabled children. Their “childness” is still intact. They are children after all.
They all have families, mothers, fathers, siblings who are deeply impacted by the journey they take. It was not the one they planned when they got pregnant but their journey nonetheless. The paediatrician is honoured to share that journey. She hopes she has helped to make it a bit easier.
As Joanna’s song ended and the audience erupted into deafening applause. The paediatrician thought, “So many children, so many families.” They just confirmed in her that God gives all children life. And just as life is given, it also ends.
Stephanie was born with a terminal illness. There was nothing that could be done.
“Why did God let my baby die?” asks the father.
The paediatrician asks God for the right words. “This is not your fault. Your baby was just too ill to survive, but you showed her more love in her short life than many people have in a long lifetime. I believe there is a heaven where there is no pain, no illness and no disability and God has a special love for His little children.”
She knows that death for some of her families means endless nothingness. She remembers ‘Use your God-given abilities to reach those who don’t know Him – and give Him credit for your talents.’ “Jesus gives us two commandments: to love the Lord and to love others as we love ourselves” (Matthew 22:37-40).
The crowd is standing now, the applause lifting the roof. Joanna smiles from ear to ear. Her parents hug.
The paediatrician shuts her eyes and says a silent prayer. “Dear Father, Father of all children, thank you for loving Joanna. Thank you for helping me to see the ability in a person and learn to ignore their disability. Please continue to use me as your hands and may all who come in contact with me know that I am Christian by my love. Amen.”
The very able children in this story are real. The names of the children have been changed to protect their privacy.
Dr Kathryn Thacker Dr Kathryn Thacker works as a rural paediatrician and in an urban children’s emergency department. She enjoys educating in the art and joys of Paediatrics. Writing for her is as necessary as breathing. She is married with three awesome children and is owned by a bossy Jack Russell called Beau.