The Ancestors had a saying…

Above: Yvonne de Peiza photographed at her Chaguanas home. Make-up by Shenelle Escayg, photograph by Mark Lyndersay.

The ancestors had a saying that “when a woman got pregnant she had one foot in the grave and the other on the outside”. It took me a while to understand the meaning, which meant that all pregnancies were to be taken seriously and treated with great care.

I was baffled about how much of it was really touch and go, dependent on the birth mother, or was some or most of it due to medical negligence?
For me, when I got pregnant with my first-born son in the early eighties, my grandmother, as ailing as she was, took care of my needs. She was a self-taught village midwife by profession.

I did not need the assistance of a gynecologist, the only measure of antenatal care I had was attending Lamaze classes at the San-Fernando General Hospital clinic, which was recommended by my family physician.

Twenty-two years ago I was in my late thirties and that time around, I placed myself and my pregnancy in the hands of a gynecologist who worked at a supposedly reputable private medical facility in the South of Trinidad.

I was birthing twins, talk about the old ancestral adage! But with this pregnancy I experienced negligence which led to my daughter Nicolette being diagnosed with Cerebral Palsy and the loss of her other sibling.
I remember it as if it was yesterday.

For two months my OBGYN knew I had a dead foetus in my womb, yet saw it fit for me to go to the facility every day for those two months to retrieve specimens of blood for a test called caloric testing. I think about those two wasted months, doing tests that were irrelevant to my welfare as well as that of my unborn.

During this time my unborn daughter Nicolette, was being infected from toxic poisoning from the other dead foetus. His claim was, he was waiting to see if she was going to increase in size in her sac because they were in two separate sacs, but eventually there was leakage which affected her and almost made me meet my demise.

It was under the care of another doctor, after seeking a second opinion, that I underwent an emergency delivery. But by that time the damage was already done! While I had this beautiful baby in my arms, I had a baby that would be intellectually and physically challenged.

If only I had gone in to emergency delivery upon the pronouncement of the death of the stillborn foetus things would have turned out differently.

As she grew older, we had to learn to deal with and find coping mechanisms to understand her every need, every pain, every twitch, every smile, and her every emotion that she experienced as a child diagnosed with Cerebral palsy, Seizures, Microcephaly and Spastic Dysplasia.

Over the years as she grew older and we faced the challenges of the medical facilities, we recognised that in this beloved country of ours we are not prepared or any way near to being prepared for the medical care of children with disabilities.

Nicollete had to be warded at the hospital a couple of times in her short life on this physical earth, most of the times for asthma and aspirate pneumonia, which derived from her lack of ability to swallow or digest food without choking.

Some of the doctors on the paediatric ward tried their best, many times just putting her on antibiotics and doing a million and one chest x-rays, with no thought as to how much damage was being done to an already vulnerable child, by being constantly exposed to radiation.

Eventually we took the bull by its horns and took the decision for her to have a feeding tube inserted so that she could have her feeds without aspirating and choking. This was one of the best decisions we made as parents, for it kept her off the ward for a long time.

In her teens, we faced the difficulties of not being allowed to place her on the ward designated for children. Once a child reaches the age of sixteen, whether they have disabilities or not, the child is now accommodated on the Adult ward and in the Adult emergency room.

As a parent and a former medical institution employee, that was my greatest disgust, to place a child on a ward with the adults, for all her needs were like that of a six year old child.
What I found over the years, is that the doctors and nurses, most of them, are not trained to care for children with special needs. It was care by design and practice. Many of the equipment on those adult wards were not even designed for children or adults with disabilities.

Even the dietary department is not equipped to meet the nutritional needs of these children, the lack of supplements, especially for feeding children with feeding tubes. The lack of paediatric occupational and speech therapy care is naught to say the least, especially in the Eric Williams Medical Sciences Complex, an institution that was built and furnished to be the mecca of all medical institutions of the Caribbean

I have written many letters of complaints and suggestions to the Medical Chief of Staff, the CEO, the Quality department, the head of the paediatric emergency area, who on a few occasions refused to accept Nicolette in the paediatric emergency area and on the paediatric ward, despite speaking with Nicolette’s paediatric consultant.

It is a pitiful sight to see children with special needs not being given the attention and priority that is required. The solution is multi-faceted, first and foremost these institutions are supposed to have designated wards that are fully equipped with the necessary equipment and trained personnel to allow a multi-disciplinary approach to the care and treatment of children and/or young adults with disabilities, because this is what is needed.

Personnel such as Occupational and Speech therapists are needed, alongside full parental involvement.
I have found over the years, in my capacity as a parent of a child with special needs, I used to teach the doctors and nurses everything they needed to know, inclusive of her medications, wants and needs, when she was having a seizure or not, the difference between seizures and cloning etc.

Many times I observed from being on the ward twenty four-seven, that the nursing personnel would hardly ever check on you and your child except when they would pass around to take the vital signs and on the doctors’ rounds.

They took it for granted that as a parent, you can do all that was required. There is a lack of interest and failure on the part of our Ministry of Health and our health administrators to be educated on the care and compassionate nature of the care and well-being of children with disabilities.

At the end of it all, the parents of children with special needs want their children to be treated as human beings, with dignity, and not as aliens from another planet without feelings. We do not need pity, we need empathy and for our children to be respected.

Such is so not good with our health institutions, that while Nicolette spent her last nine days on this physical earth almost two years ago, on her final day the medical personnel still did not have a clue as to what was happening to her, why all the tests they did were all coming back negative.

So, on Emancipation Day 2017, she said her goodbye, with that look in her eyes, for she was tired. She knew she was loved and we were with her, the parents that loved her, the parents who looked beyond her disability, the parents who cherished her and yet gave her the permission to rest in peace and fly with the angels.

She got her freedom to walk, to talk, to dance and sing and as parents she gave us our freedom to be. Her passing has made us stronger because we have accepted that God took her home before he took us and on a beautiful day of freedom too!

The death certificate reads Cerebral Palsy, Asthma and Pneumonia, none of which she was treated for, because at that time she had neither Asthma attacks nor Pneumonia. But such is the custom and practice, because she was a known asthmatic. Say what! Medical profession in T&T, diagnosis T&T style!

Rest in eternal peace Nicolette, all our love.

Sponsors: Dale McLeod, Jacqueline Scott, Starlite Collection, Sacha Makeup, JB Fernandez Memorial Trust II.