Vol 91: The load we carry
Doctors told Emily with a modicum of certainty that she’d never be able to have children. She was 21 at the time. Diagnosed with a severe form of Polycystic Ovary Syndrome (PCOS), her ovaries were inundated with cysts and for months she’d been exhibiting irregular menstruation, weight gain and excess body hair. Emily was happy to finally have an answer that adequately explained all her symptoms but the news that she would never have children was devastating.
In PCOS, a condition that is surprisingly common in females though in varying degrees of severity, ovaries produce an excessive amount of male sex hormones which in turn inhibits ovulation. Birth control medication, as in Emily’s case, is often prescribed to regulate hormone levels but eventually she had to stop taking them because they were causing consistently elevated blood pressure coupled with recurrent headaches and extreme nausea. Fortunately, the moment she stopped her symptoms dissipated quickly.
Four years passed relatively symptom-free. Then when Emily was 25, her headaches returned and with a vengeance.
This time they were more intense and lasted for longer periods of time, often disrupting her sleep. Emily had a check-up with her doctor and all her tests were normal. So, out of an abundance of caution, her doctor decided to perform a pregnancy test and to their utter shock, it was positive. Emily was beside herself with emotion, caught between feelings of joy and disbelief. When an abdominal ultrasound confirmed that she was close to six months pregnant, she fainted and smelling salts (an ammonia inhalant) was quickly used to revive her.
Leaving the doctor’s office that fateful day, having initially gone to seek treatment for a headache but now knowing that there was a life growing inside her, was absolutely surreal. People often wonder how she didn’t know that she was pregnant, but all of her symptoms prior to that point were non-specific. Weight gain, particularly in the abdominal area is common with PCOS and whenever she experienced fatigue, nausea or vomiting, she believed it to be a side effect of her headache medication. Emily (an alias) is my patient and that day her life changed forever.
Within three weeks of finding out she was pregnant Emily was hospitalized because her cervix started to open and to prevent preterm birth, a cervical cerclage was performed. In this procedure, the cervix is temporarily closed with stitches in an effort to delay labor until the baby is more developed. Emily remained in the hospital for two weeks.
Shortly after she was discharged and now only six and a half months pregnant, she was shaving her legs in the shower when she felt a gush of water drenching her legs. Immediately she knew her water bag had burst. Her family rushed her to the hospital, gravely concerned.
Now in full labor, Emily was pre-warned by her doctor and nurse that the baby she never knew she could have, but already felt so much love for, likely wouldn’t survive. She understood yet refused to accept a dire fate for her son all the while knowing that if he survived, it would be months before she could take him home followed by valid concerns of his mental acuity.
Her son, who we’ll refer to as Mason was born weighing less than a pound and immediately placed in the neonatal intensive care unit (NICU). While there, he developed an infection that was treated intravenously with antibiotics and he underwent multiple surgeries to close a valve in his heart. Mason coded twice and both times he was disconnected from monitors and placed in what looked like a shoe box. Both times, Emily cried, screamed and begged for doctors to reconnect him to the monitors and both times, through God’s grace, he survived.
Mason was finally discharged home after four months of care in the NICU. Physically, Mason developed without any issues and Emily is eternally grateful for that blessing. But by age two, he still wasn’t talking and she became increasingly concerned. Mason was tested for autism but the test was normal and Emily was advised that delayed speech is not unusual. When he turned three and still wasn’t speaking, Emily did some research on her own.
With the dogged determination of an impassioned mother, she eventually took her son to have a hearing test. Initially the audiologist told her that his hearing was fine but on a subsequent visit, Emily was told that Mason was experiencing some mild hearing impairment and needed hearing aids.
Not long after spending several thousand dollars on the hearing devices, which never helped, Mason developed fluid build-up in his ears and after a lot of back and forth, Emily took her son to a children’s hospital in the US for another opinion. There she consulted with an ear, nose and throat (ENT) specialist and Mason underwent surgery to drain the fluid in his ears. He also had a hearing test performed intraoperatively and results were conclusive. Mason was profoundly deaf in his right ear and moderately to severely deaf in his left ear.
Frustrated that for three years she was told that everything was fine, Emily wept, shedding tears for what her son had gone through and angry that despite her many attempts to get to the bottom, the healthcare professionals who managed to bring him into the world and save him at birth failed him as he faced the most formative years of his life.
Certainly not by its intention but perhaps in its effect, one of the medications that Mason was given while in the NICU to save his life caused him to lose his hearing. But the situation was not without hope. The ENT specialist referred Emily to a hearing institute in the same area to see if Mason would be a candidate for cochlear implants and he was.
Initially the surgery was denied by their insurance provider because Mason had already been dispensed hearing aids that year. They subsequently approved it once they received a letter written by Mason’s specialist at the hearing institute explaining that a hearing aid, which functions to optimize and amplify acoustic sound, is for someone who already has some level of hearing. But when hearing loss is profound no acoustic sound is detected making hearing aids obsolete. A cochlear implant instead bypasses the inner ear and translates acoustic sounds into electrical signals transmitted directly to the hearing nerve and brain.
At a total cost of seventy thousand dollars, the procedure, implant and hospitalization weren’t cheap and without insurance it wouldn’t have been an option. They stayed in the US for six weeks before the implant could be activated and when it was, Mason reacted with a gamut of emotions to every sound he heard, jumping and waving with a joy that his face lacked since birth. The look in his eyes beamed with gratitude as if to say that today of all days, someone finally saw him. Mason cried the first time he heard the toilet flush, never knowing that the water disappearing down the toilet bowl made noise. Watching him react to every new sound and his innocent bewilderment was emotional.
Two years later, when he was five-years-old, Mason gradually began to speak and within the same year, with the help of a private speech therapist, he began to articulate his words. Today, Mason is 12-years-old and he still struggles with comprehension and articulating words but he gets better every day. Amazingly, what he lacks in English, he makes up for in math because in that subject, he truly excels. He is also learning sign language to augment his speech. Emily’s primary concern is that Mason grows up to be strong and can vocalize things for himself so that no one ever takes advantage of him. Until then, she vigilantly stands guard.
Emily’s take-home message is that prayer can move mountains. With a big smile and sense of pride, she says that Mason is a miracle baby and she feels blessed to be his mother. She encourages other mothers to always seek a second opinion when something doesn’t feel right and she wishes that hearing tests were more routinely performed on babies. Never wanting to attribute to malice what can be attributed to incompetence, Emily also reminds parents to always question what drugs are being administered to their children and what the potential side effects entail.
Often times, we carry a load so heavy that after a while we forget what it’s like to live without worry. The day she discovered she was pregnant, a heavy bolder was placed atop her shoulders but for her own survival, Emily has fortunately been able to offload some of the weight to her husband and her parents. Together, they’ve sought to tackle only the burdens for the day and not ones from yesterday or those appointed to the future. Day by day, it makes for a smaller mountain to climb and a much lighter load to carry.
This is The KDK Report.
