He came from a family, where only the highest standards are expected. It was a family where perfection was very highly valued. Hence when antenatally, an abnormality was noted, the bereavement started. The parents started grieving for the loss of a ‘perfect baby’. They moved through the stage of denial, were worried and were convinced ‘other people’ will talk BAD things behind their back. They anticipated harshness rather than support from family and friends. It was deemed not a good thing to need support and help.
The day this special baby was born, everyone including the medical team was stunned by the physical appearance of the baby: severe proptosis in a baby with a clover-leaf skull caused a definite feeling of pity for the baby upon first sight. There was increased intracranial pressure and hypoplasia of the mid face caused choanal stenosis forcing the baby to open the mouth for breathing. From a professional point of view, we assessed this baby from head to toe to determine the chance of survival and prognosis. We talked to the father, who thought the mom would be too shocked upon seeing the baby. It took 3 days to convince him that mom needed to come and visit the baby.
Treatment and nursing care were difficult….. but we tried our best to support this special baby. The raging Covid-19 pandemic rendered movement and visits to the hospital more difficult. The parents were also facing COVID-related business problems causing some financial difficulties.
A multi-disciplinary approach was needed. Considering all abnormalities, it was felt that the baby could survive but he would need a complex treatment plan, involving multistage surgery. A ventricular peritoneal shunt would be needed early to reduce the intracranial pressure. Tracheostomy would allow a secure airway and later mid-facial surgery would be needed. And the list goes on. One person was identified to communicate the plan of management.
The baby underwent the first surgery to relieve the intracranial pressure and within a relatively short period, Ryles tube feeding was tolerated. As time moved on, all medical staff grew attached to the baby, rendering lots of tender and loving care. Staff and medical students came up with creative and loving solutions for protecting his eyes from exposure keratitis. He was a very special baby but surely he was loved. Initially, the parents were still in their grief process and came to visit the baby only when called. We tried to maintain bonding by sending videos of the baby as time went by. Slowly the parents accepted their baby’s condition – having faith that this baby was a trial sent to them by our God.
To make a difference in someone’s life, you don’t have to be brilliant, rich or perfect. You just have
to care and to love
After 2 months, unfortunately, he became ill with a very severe infection. “How should we go on?” “How much can he withstand?” The first step: discussion among all the team involved in the management including the nursing team. Comfort care was proposed and all agreed to this. No more painstaking operative procedures, no endotracheal intubation. Only adequate antibiotics and good analgesia for our brave boy and of course a lot of tender and loving care.
As usual, all these things happen during weekends. The consultant who had been communicating with the parents agreed to come and talk to the parents even though she was not on call. The switch from curative to comfort care was discussed with the parents. They agreed and showed signs of relief. They wanted confirmation that we did it mainly for the comfort of their baby and not because we thought the treatment was too expensive. We totally reassured them about this point.
We moved our special baby to a room, to ensure more space and comfort for him and the parents. The mother was offered to hold him in her arms. Initially, she was worried about this causing more discomfort to him, but later she appreciated very much the long period she held her very special baby in her arms. So, for our special sweet baby, after about 6 hours with the parents, he returned to his creator….. all in a smiling face.
After he passed, the parents were given more time to hold him. When they were ‘ready to let go’, the team cleaned his body and helped the parents go through the paper works and helped to arrange for ‘mandi jenazah’ in the mortuary itself. This last part was important to minimise the chance of exposure of the dysmorphic facial features to other family members.
In our unit, we prefer to use the term COMFORT CARE instead of ‘Do Not Resuscitate (DNR), palliative care, withdrawal of care’. It is not just about the choice of words, it really means a plan. A dedicated staff, who preferably had been in contact with the family and knows how to handle the patient, needs to be there, with the parents.
Parents commonly have a few concerns when it comes to comfort care:
- Will their babies be ‘’pushed to a corner’ and left alone?
- Does it mean we ‘kill’ the baby? (euthanasia?)
- In the Newborn Intensive Care Unit (NICU) especially, when we allow the parents to hold their baby – when there are so many monitor wires and tubes attached to them, will this induce more pain to their child.
These questions can be addressed, even before they are asked. I would like to share the following practical points that can be very helpful for medical personal dealing with sick babies:
- Everyone is reassured, made aware that the babies will still be monitored and observed as usual. Most of the time, we put the baby in a room or in a more isolated area – to provide more privacy to the parents and
- There is a big difference between allowing the baby to die peacefully from an unavoidable natural cause, not prolonging artificially induced suffering, not prolonging futile care on one hand and mercy killing (euthanasia) on the other
- Parents are reassured that by holding their child actually makes him more comfortable and probably the last piece of puzzle of care for their baby.
- Practically points on how do we put our special baby for their parents on their lap:
– Ensure all the tubes or lines are secured
– Ensure the ECG and saturation monitors are connected. This shows that we are still monitoring the baby. - Gently swaddle the baby, preferably using his own blanket and gently put him to their
- Stay by their side for a short while – explain the monitors, guide them on what is probably good to do g. talk to the baby, sing or recite some religious phrase, take photos etc.
- Check on them intermittently
- After the baby passed, give some time to the parents to say their final Once they are ready to let go, I usually say this – ‘we need to take your baby to clean him, after that you can hold him again’.
- Guide them on the paper works that need to be done – the bills, the burial permits etc. Give them an estimate time on how long it will
- Offer them the available service in your hospital. In our hospital ‘mandi & kapan jenazah’ service is This is especially important if the baby has dysmorphism.
- Last but not least – encourage and give some time to the managing team (nurses, doctors, other staff) to say goodbye to the baby. They are the ‘’mama and papa” for this baby during their stay in NICU. This helps our staff to be strong to let-go and they will be ready to give the same tender loving care to the next
This is one special baby that God entrusted to us… he taught us a lot about life, love and care. We hope the parents continue to be strong – we hope we have managed to make his last few moments in our NICU not the best memory but least painful for the parents. And we hope we had given the best care and love for him during his short stay with us here.
Authors: Hans Van Rosternberghe, Nor Rosidah Ibrahim and Noraida Ramli
The trios are in-charge of the neonatal unit in Hospital Universiti Sains Malaysia, Kubang Kerian Kelantan. Interestingly Hans is from Belgium, Rosidah is from neighbouring state of Trengganu and Noraida is a Minangkabau lady (Negeri Sembilan).
Together our aim is to help the small babies to achieve the best potential of their life.
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This information was published with permission from Malaysian Association of Paediatric Palliative Care (MAPPAC)
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