Alberton mom speaks out after CMV virus nearly claimed her baby's life
Alberton mom speaks out after CMV virus nearly claimed her baby's life
Kayla Jelly's life changed most unexpectedly on December 11, 2024.
What began as a seemingly ordinary workday ended with the birth of her second child, Emily-Grace. She gave birth at home, in her bathroom, without medical professionals present, and with life-threatening complications looming unseen.
What followed was a journey marked by trauma, resilience, deep faith, and a commitment to give Emily-Grace the best fighting chance at life.
Jelly, who had experienced a long labour with her firstborn son two years before, initially dismissed the early morning cramps as false alarms.
'We joked and said, 'It's too early for the baby to arrive' and 'We're not ready,'' she recalled.
Wanting to attend her company's year-end function, she pushed through the discomfort and went to work.
But as the day wore on, the cramps intensified, eventually revealing themselves to be contractions.
After returning home, Jelly rested, trying to ride out the discomfort.
With her husband at work and her condition worsening, her sister called their mother to come home.
That decision would prove life-saving.
'I decided to shower before heading to the hospital,' Jelly shared.
'But as I got to the bathroom, I had a big contraction and then another. That was the moment Emily-Grace was born – straight into the toilet bowl.'
The shock of delivering a baby alone at home was profound.
'I was afraid that I was going to either hurt or lose my baby,' Jelly said. 'I was exceptionally grateful that my mom and sister were with me. I can't and don't want to imagine what could've happened if I were alone.'
Her mother, showing quick thinking and calm under pressure, took immediate action.
'My mom shouted for me to move over, picked up Emily-Grace, wrapped her in blankets, rubbed her back, and made sure she was breathing,' Kayla recalled.
Her sister stayed on the phone with the ambulance while their mother-in-law, a qualified nurse, guided them through clamping and cutting the umbilical cord.
Emily-Grace appeared stable when paramedics arrived.
She was taken to Netcare Alberton Hospital, and the family breathed a sigh of relief, grateful that she had survived the traumatic birth.
But just two days later, their relief turned to anxiety.
A diagnosis no parent expects
On what was supposed to be Emily-Grace's discharge date, December 13, the hospital's paediatrician ordered a full blood culture due to concerns stemming from the home birth.
The results were devastating. Emily-Grace had developed a serious infection and was immediately admitted to the neonatal intensive care unit.
'She was placed on machines to help her breathe, needed medication to support her heart, and could not feed on her own,' Jelly explained.
'She aspirated for two weeks and only began bottle feeding once her oxygen support was reduced.'
A series of tests soon revealed even more heartbreaking news.
Emily-Grace had suffered bilateral brain bleeds and a lesion on the occipital lobe.
A 24-hour EEG ruled out seizures, but the tests led doctors to a diagnosis of congenital cytomegalovirus (CMV), a little-known but serious viral infection that affects approximately one in 200 newborns.
'We had never heard of CMV before,' Jelly admitted. 'The diagnosis brought so much uncertainty. We were heartbroken.'
CMV can cause long-term complications, including hearing loss, developmental delays, and visual impairment.
Emily-Grace was tested for all of these.
While her eyesight was thankfully unaffected, her hearing tests revealed a different challenge.
She was diagnosed with profound hearing loss in her left ear and mild to moderate hearing loss in her right, requiring a cochlear implant for the left ear and a hearing aid for the right.
Fighting for her life and her future
Emily-Grace's treatment included two rounds of powerful antiviral medication: first, Ganciclovir via IV in the NICU, and later, Valcyte (Valganciclovir), an oral medication she continues to take daily.
The treatment carries serious side effects, including depletion of white blood cells, reduced platelets, and potential bone marrow damage.
She requires regular blood tests to monitor the impact, and the medication comes at a steep financial cost.
'Our medical aid rejected coverage for the antiviral medication, which costs nearly R7 000 per 100ml bottle,' Jelly said. 'We're on our fifth bottle, and the burden has been overwhelming. Changing medical aids also came with complications, as her condition is now considered pre-existing.'
Despite these challenges, Kayla describes her daughter as 'a miracle from God' and says her family's faith has only deepened through the ordeal.
'We would not have made it through any of this without God at the centre. Emily-Grace is a testament to His miracle-working power.'
A new normal, a new hope
Today, Emily-Grace continues to defy the odds.
Though she missed her original milestones due to the CMV and hearing loss, she is now cooing, making sounds, and interacting with her family.
She wears a hearing aid in her right ear and will undergo cochlear implant surgery once she's strong enough.
She's also receiving occupational therapy for truncal hypotonia and potential microcephaly, both side effects of CMV.
'She takes time to process sensory input and gets overstimulated quickly,' Kayla explained. 'But she is improving. We practice daily stimulation and exercise, and her big brother is her greatest supporter.'
Emily-Grace is unable to attend crèche due to the risk of infections and is currently cared for by her great-grandparents during the week.
Faith in the storm
Jelly credits her emotional strength to her faith and support network.
'We have a village. God is at the centre, and every person in our lives is filled with faith and positivity. We support one another openly and honestly.
'From the clear heart scans to improvements in her hearing and her resilience through medication, every step has felt miraculous.'
Her journey is far from over.
Emily-Grace must continue with her treatment, follow-up scans, and developmental support.
Her family continues to fight not only for her health but also for the financial resources to sustain her care.
Yet through it all, Kayla holds firmly to hope.
'She is strong. She is brave. She is our miracle,' Jelly said. 'And we thank God daily for our little warrior, Emily-Grace.'
A message to mothers
'I believe it is very important for expectant mothers to know more about Congenital CMV and to take all precautions to prevent being infected with CMV or swine flu,' Jelly said.
'I had swine flu in my first trimester and was informed by our audiologist that swine flu during pregnancy can also cause hearing loss. The swine flu and the CMV did not give us good optics.'
Jelly strongly advocates that blood culture tests be performed on all newborn babies before they are discharged from the hospital.
'If Emily-Grace had not been born at home and had not fallen into the toilet, the doctors would not have done blood cultures, and infection counts on her, and we would not have known about her diagnosis, which would have been determinant to her life.'
Anyone wishing to donate to Emily-Grace's medical treatment may visit Emily-Grace Medical Fund.
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