A friend recently sent me a link to join a WhatsApp group and without asking too many questions, I joined the group which seemed quiet and left a few days later after giving it some thought.
My daughter has been given just Months to live - shattering reality mother of 1 is going through
Enjoy every single moment you have with your child
Little did I know that there was a much bigger story behind the group before I exited and deleted it.
Fast forward to April 30, a somewhat humid Nairobi morning and here I was in a cab heading to Nairobi Hospital for an interview with 24-year-old Ruth Wambui Mburu.
I know she’s the mother to a beautiful baby girl Neillah Mirera, who is admitted at the Nairobi Hospital with a very rare medical condition but nothing prepares me for the unsettling despondency I walk away with after the sit-down.
“What I’d tell any mother out there is to enjoy every single moment they have their child. Whether it is the long nights when baby is crying despite everything you've done to make her comfortable or even the milestones that seem so menial, just enjoy the time you have with your baby,” Ruth advises.
Ruth recounts every step of her journey with baby Neillah with such perfect acuity, it’s almost as if she relives it everyday. On this day we didn't meet Neillah’s dad, he was engaged at work.
“I had a normal pregnancy and even delivered normally on February 14, 2018 but the first thing I noticed when I saw Neillah was that her eyes were yellow but the doctors said it was normal. We went home and a week later the yellowness was more visible so we took her to Getrudes Hospital - Donholm where I was given some medication to give her and advised to expose her to sunlight. Thankfully her eyes regained the white colour and she was okay,” Ruth narrates.
Initial Signs of Neillah’s condition
When Neillah was 3 months old, Ruth noticed that her daughter was not growing at the same rate as others her age. Clinic visits showed that Neillah was only gaining weight in grams but the doctors advised it was a normal occurrence.
Ruth also recalls that her daughter missed major milestones such as being able to lift her head unassisted, which normally occurs at two months, and she had low muscle tone.
A visit to a Pediatrician when Neillah was six months old resulted in a Rickets diagnosis and the baby was put on a three-month cycle of medication to boost her Vitamin D levels.
She was also put on Occupational Therapy and it seemed that she was gaining strength and improving on her growth graph.
But Ruth was still worried about her daughter and alarmed that Neillah’s age mates were leaving her behind. At this point, doctors had begun to blame Ruth for Neillah’s slow progress saying that she had neglected OT exercises meant to be done at home.
Finally, an accurate diagnosis of Neillah’s Condition
“Are the two of you related?” a Neurologist asked Ruth and Neillah’s dad when they went for a gene test in November 2018.
“We both found that question very awkward, I remember we looked at each other in surprise but we knew there’s no way we could be related. I’m Kikuyu and he’s a Luo. So we proceeded with the test and the doctor told us the results would be ready in two to three weeks but since Neillah was improving I wasn’t keen on going back for the gene test results,” Ruth narrates.
On March 1, 2019, Neillah had to be rushed to Nairobi Hospital at 3 a.m. after erratic fevers, which had become normal for her, got worse.
This time she had to be put on life support machines because she was struggling to breathe and the doctors feared she may get exhausted and give up altogether. She was also diagnosed with aspiration pneumonia and went through rounds of nebulization to clear her airways.
“The doctor who was treating Neillah at this point asked me if I had ever taken a gene test and luckily the neurologist who had done it was also from Nairobi Hospital. So Neillah’s doctor accessed the results and had begun to insist that the Neurologist who did the test be contacted to come and interpret them for me but I asked him to just tell me what he had seen.
“He then told me to go home and Google Spinal Muscular Atrophy, the condition Neillah has. I also remember he specifically told me ‘What I can tell you is just enjoy the time you have with your baby. Normally children born with the disease never reach six months but since Neillah is past six months, she may not live to her second birthday’,” Ruth recounts.
SMA is a genetic condition which affects the nerves that send signals to muscles. This means that Neillah’s nerves are wasting away and taking away her ability to walk, eat and even breathe. Ruth and Neillah’s dad are both carriers of the gene that causes the condition.
When we meet Neillah, she is out of ICU but still on oxygen. She now has a feeding tube and a tracheostomy tube in her throat to help her take in air.
Her mum had mentioned that she is a very clever little girl and we now see it. She scans our faces for a while and only smiles when she sees her mum. When she is finally used to us, she smiles at us as we wave and make funny faces at her.
Ruth spends her every waking moment dutifully beside Neillah, nursing her wounds, learning to feed her through the PEG tube and singing to her.
“I decided that I will treat Neillah like a normal baby so I’m always teaching her new things and singing to her and talking to her because she is also a very happy baby. The tube in her throat has prevented her from talking or making any sounds even crying so I always have to be with her to notice if something is wrong,” Ruth explains.
SMA is the number one genetic disorder killing infants in the world, there’s no cure but there is a drug (not available in Kenya) which improves the quality of life for a baby suffering from the disorder. It costs Sh75 million for the first year it is administered and Sh35 million for subsequent years.
Neillah’s parents have a WhatsApp group where friends and well-wishers have agreed to contribute daily to help raise Sh4.5 million that is required to clear Neillah’s bill at Nairobi Hospital.
Funds can also be sent to the Neillah Medical Fund Paybill Number 703822.
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