#CareforKhairo

Our Son Khairo Raheem was born perfectly healthy on the 16th of October 2021. We were given the green light to go home the day after his birth, having passed all his newborn checks. However, Khairo was in the care of a community midwife as soon as we were discharged from the hospital for our daily checks; this is part of the standard procedure to ensure mother and baby continue to be monitored in the community. Sadly, due to processes not being followed and mistakes being made by healthcare professionals, as a result, Khairo has suffered brain damage.

.

The Midwife acknowledged that Khairo was jaundiced. However, they wanted to wait it out and see how he felt at every check-in and informed us that my darker skin tone makes it harder to identify jaundice. I will spare the details, for now, to avoid this becoming about our anger towards the team and how badly our son has been let down and make this post about hope, faith and care for Khairo.

.

Jaundice, if managed appropriately by health professionals, is not dangerous. However, if Jaundice is poorly managed by professionals and not treated properly, it can cause brain damage. Sadly for Khairo, his brain was damaged by the time we took him to A&E, which was just a few short hours after having seen the midwife that told us to wait it out till the weekend. By this point, Khairo was inconsolably crying, arching his back and had stopped feeding. For our precious boy, the damage had been done.

.

Alhumdililah Khairo showed no sign of giving up in the hospital even whilst fighting for his life. The hospital informed us that this was the highest level of jaundice they had ever seen and had no idea how a medical professional could have let it get this bad. Khairo had a blood transfusion that neither his father nor myself will ever forget watching our little boy go through such a difficult and painful time.

.

What started with elevated bilirubinaemia (jaundice) has led to brain damage called Kernicterus. This is an incredibly rare and preventable form of brain damage. His Kernicterus affects the basal ganglia part of the brain that controls all movement; therefore, any motor skills are governed by that part of the brain. Because of this Khairo has not met any milestones and is currently 9.5 months old with no head control, does not have use of his hands/arms and is heavily dependent on us for support, movement and daily living.

.

Because of the Kernicterus, he has several other challenges, such as

Dystonic Cerebal Palsy – This results from brain damage in early life. Cerebral (brain) Pasly (weak muscles or problems with using the muscles)

Dystonic/dystonia involuntary muscle spasms and movements.

Trunkal hypotonia- lack of muscle tone in his neck and trunk area, causing him to flop and not hold his weight.

Hypertonia/hypotonia – the fluctuating muscle tone between extreme stiffness and floppiness

Auditory Neuropathy- ANSD, a specific type of hearing loss resulting from hyperbilirubinemia.

Cortical vision impairment – delayed maturation of the eyes, severe light sensitivity and an inability to have a downward gaze.

Khairo is edging towards his first birthday and has not reached any developmental milestones expected of any baby during their first few months of life. Khairo is not holding his head up unaided, not rolling, crawling, sitting up or doing anything a baby should be doing to thrive in their development. It sounds unbelievable when I think back or even read this story because of medical negligence. But, if the lessons from Khairo’s story can save a baby’s life, then Khairo is already changing the world for the better.

Khairo is currently attending x1 day per week physiotherapy. We aim to create an intensive therapy package for him with the money raised to help/encourage him to learn new skills against all odds.

.

All funds will go towards supporting us to provide;

Physiotherapy

Chiropractic care

Hydrotherapy

Speech therapy

Occupational therapy

Specific medical equipment (compression suit and anything else that might be needed)

And other options that could be available to us, such as stem cell therapy or deep brain stimulation if medically appropriate for Khairo.

.

The treatments listed above are all aimed at giving Khairo the best chance at leading an ordinary and able life. Khairo will continue to need these treatment for the entirety of his life. The support we have been able to provide up to this point has been a weekly private physio session at £100 per hour.

We now need to intensify that support as the neuro plasticity of a baby’s brain develops greatly in the first 2 years of life, making his immediate future crucial. 

We have calculated with an increased support plan including many of the above therapies the cost will be at £2000 per month. We have set the goal for this fundraiser with this in mind to get khairo the much needed support up to his second birthday thus making the most of this crucial time in childhood development.

.

If you feel touched by our story and would like to help us in any way, please donate whatever you can without any pressure. Any amount will help us get the ball rolling with the above therapies. I plan to keep this updated as much as possible with pictures and written updates; thank you for your support, kind words and prayers for our boy and our little family. 

Inshallah with all of our endless love and dua’s for Khairo we can help to make his world a better place.

JzakAllah Khair for all of your donations, we will continually update you all with Khairo’s progress.

#CareforKhairo