Clinging to hope in the face of overwhelming odds

Apr 14, 2013 News

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– A Sickle Cell patient tells her riveting story

By Sharmain Grainger

Medical professionals have over the years warned that life for patients diagnosed with full blown Sickle Cell disease is not only likely to be shortened, but it is highly unlikely that they could lead normal lives.
Sickle cell disease, which is also known as sickle cell anaemia or “SS” disease, is said to be an autosomal recessive genetic blood disorder with over-dominance, characterised by red blood cells that assume an abnormal, rigid, sickle shape.  This often results in a child, both of whose parents have the sickle cell trait, becoming diagnosed with full blown sickle cell, a disease more prevalent in Africans.
Once sickling of one’s blood cells occurs, there is always a possibility that immense medical complications will result, which is driven by a mutation in the haemoglobin gene.
Having been diagnosed at the age of nine with full-blown sickle cell, there was not much hope for a normal life for Desiree Fredericks.  As the eldest of seven children she grew up with her parents and siblings at Anna Catherina before they moved to Stewartville, West Coast Demerara.
As fate would have it, she was the only one among her siblings with the ailment. She remembers how growing up with the disease was a major challenge as joint pains and other devastating complications would overwhelm her frail body.
“I would feel pain naturally hitting me to the bone… so severe sometimes that I couldn’t even walk,” she recalled during a recent interview.
So distressing was her infliction that she was forced to not attend school on many occasions and would have to be rushed to hospital for emergency treatment constantly. She was required to take a plethora of medication and oftentimes it was those that would help to ease the pain she was subjected to as a result of her condition. She remembers praying to be cured of the condition.
And by early adulthood, Desiree was convinced that the worst had passed. The pains that she had grown accustomed to over the years had subsided. Instead of being rushed to the hospital on a regular basis, her admissions were reduced to a mere three times per year on average. Life was actually becoming a bit more manageable, so much so that she was even contemplating marriage.
Desiree had grown up in a Christian home and was hoping to find a Christian husband – and so she was sure that Marlon Fredericks was the right one from the get-go. But to her amazement, many of the individuals who were aware of her medical condition were more than eager to warn her intended husband that she may not be the right choice for a wife.
“People used to tell him it wouldn’t be a wise decision to marry me, because people with sickle cell would normally lose their babies,” she recounted.

But their efforts were no match for destiny as by the age of 27, she and her sweetheart had tied the knot. Soon after marriage she was pregnant with her first child and it was as if she had plunged back into a forgettable phase of her life when she was subjected to unbearable sickle cell crises.
She recalled that throughout her entire pregnancy she was rushed to the hospital every week.
“First it was the Best (West Demerara Regional) Hospital, and when the doctors there would see me coming they used to know exactly what to give me. It was just stomach pain and more pain, but then they eventually couldn’t handle me, so they decided to transfer me to the Georgetown Public Hospital.”
So severe were her crises that both nurses and doctors at the city hospital were forced to vocally register their concern about a full-blown sickle cell patient attempting to carry through with a pregnancy.
“They were constantly telling me ‘you are full-blown sickle cell patient, you know you are not supposed to make children’.”
According to Desiree, medical officials did not fail to remind her repeatedly that not only could her child get the disease, but there was a possibility that she could lose her life in the process.
“There were just a whole lot of negatives I was getting. One doctor even said that he wouldn’t allow me to go through with the pregnancy because I had become severely ill.”
She recalled how her condition required that she be given medication constantly to ease her pain and she disclosed how prayers were what kept her going. She remembers “blacking out” as a result of her pains, sometimes, and reviving to the sound of her husband praying over her.
“He, like me, is a true believer in prayers and he would always tell me everything would be alright,” said Desiree of her husband.
By the time she was around four months pregnant, even the doctors were beginning to come to terms with the fact that she was prepared to have her baby.
Moreover, a doctor who had become very familiar with her case had begun closely monitoring the progression of pregnancy and had indicated that a Caesarean Section (C-Section) would be necessary by the time she reached the seven-month mark.  As such, the doctor requested that an ultrasound be done close to that date to ascertain the position of the baby.
It was during a visit to the Woodlands Hospital to have the process done that Desiree would first learn of the gender of her yet unborn child. Two ultrasounds earlier had not revealed this, as according to Desiree “I don’t know if the baby was hiding or something at the time.”
The latter ultrasound process was quite memorable as she recalled how the attending staffer had asked her what baby she would like to have and “I remember saying how everybody telling me is a boy I’m getting but I feel is a girl.” Much to her amazement, she was informed that of the 30 ultrasounds done for that day she was the only one expecting a girl.
She left the hospital that day with severe stomach pains, but quite elated to share the news with her mother and other family members. Her husband was away on work detail in Mahdia.  She remembers how her stomach pains continued throughout the night.
The next day her mother insisted that she be taken to the hospital, which was in fact one day before she was expected to undergo the C-Section.  Desiree was not due to deliver normally until June 20th 2012, but her doctor had warned that the operation might be the safest thing to do considering her medical condition. He had scheduled her for operation on April 30.
It was the morning of April 29 and her pains had not subsided. It was in fact very different from the usual joint pains that were associated with her regular sickle cell crises.  However attending nurses had assured her that she was not yet ready to deliver, but according to Desiree, “this wasn’t the sickle cell pain. I knew for sure this was some other pain…after all these years you know that sickle cell pain and that wasn’t it.”
“I had heard people talking about turning pain so I was guessing it was turning pain I was feeling…”
Before the end of the day, nurses would inform her that she was in the early stages of labour; a process that would last for several painful hours as it was coupled with repeated sickle cell crises.
“The pain just kept on coming and going and it went straight into the night and I remember how they had to keep giving me medication for pain because they said I was having a crisis along with the birth.”
Attending nurses were forced to call in the doctor who had planned her C-Section and a decision was made to rupture her water bag in order to accelerate the delivery. By this time one of Desiree’s cousins, a midwife, was also in the delivery room rendering her assistance.   There was a team of about five midwives and two doctors attending to her and it was clear she was having no ordinary delivery.
And as if things were not already complicated, as suddenly as the pain overwhelmed had her the previous day it ended.  Desiree recalled how she informed her cousin that she was feeling absolutely no pain, an announcement that stirred the medical team attending to her into a bout of hysteria. She remembers hearing her cousin saying “this can’t be a good thing. And then I hear a doctor start saying ‘this is the same thing that happen to that Linden girl that died’.”
Unable to control her emotions, Desiree said that her only resort as she lay helpless in the delivery room was to say a silent prayer for help.
“I said Lord I have been faithful to you all these years and I truly need you to come through for me now.”  Soon after a “nipping” pain would start and before long her first child was delivered.
But neither baby nor mother was yet out of the woods, as according to the medical team not only was the baby not responding well but Desiree’s afterbirth was taking way too long to emerge. However, soon the baby would show encouraging signs of life, and another doctor decided to physically remove the afterbirth.
Desiree and her baby would spend two weeks recovering in the hospital and since being discharged neither has warranted emergency admission to any hospital. In fact, the proud mom revealed that all of her sickle cell symptoms have since disappeared, a state of affairs she premises on her unwavering belief in God.
Moreover, Desiree has been seeking to present her life story as one which amplifies her conviction that “God is a rewarder of those who diligently seek him. My advice is to never give up; don’t entertain fear or doubt, if you tell yourself that God can see you through a situation always believe it…I am living proof of that”.
She reflected on how she overcame everything negative said about her life and today has a sweet daughter – Malia Mera Nissi Fredericks – who will celebrate her first birthday in a couple of weeks.

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