On the 31st of October 2017 our lives changed forever. Our beautiful warrior princess, our first born, Ambika was born, full term. The perfect, uncomplicated 9 months of pregnancy came to a sudden terrifying halt for our family within a few hours & changed our lives forever. What I (as well as doctors) thought was the flu I’d been battling for 4 weeks, was actually Group Strep A infection which turned into the deadly killer sepsis within minutes. An emergency c-section showed my internal organs slowly giving up, hardly a placenta left, amidst was our warrior princess fighting for her last breath. What happened after that, is still a blur to me & a year down the line I am still trying to piece together what actually happened. All I know was that my Ambi was taken away from me. I was wheeled away to ICU where I stayed hospitalised for a month, I wasn't able to see or hold my baby for 10 days. She was transferred to a different hospital. We both continued to fight for our lives & to be reunited. During the whole time, Ambika’s dad was running between both hospitals making sure both his girls would make it through, speaking to all the doctors and having to make any decisions alone. What was supposed to be the best day of our lives, turned out to be so heartbreaking. It was a traumatic & scary time for the three of us & our whole family. For any first time parents, parenthood is a scary, new & emotional experience but this was on a whole new level far from what we expected. But we decided not to wallow & waste our energy on blaming & negativity - instead we are using our energy positively to heal our baby girl.
Due to my illness alongside medical negligence, Ambi suffered severe brain damage- grade 3 Hypoxic Ischemic Encephalopathy (HIE) - type of brain damage that occurs when an infant’s brain & other organs don’t receive enough oxygen and blood. Ambi’s prognosis was the worst possible. She was born with no signs of life for 6 minutes, born blue & floppy & she had to be resuscitated. I cannot even begin to imagine the pain this little one endured in the first minutes of her life. She was ventilated for 2 weeks & after a meeting with a head consultant we were told that she still was showing no signs of life, hadn’t opened her eyes or moved. The movements she was making were due to seizures & abnormal activity in the brain. Her head was huge due to excessive swelling around the brain which started to push down into her spine. We were advised to think about switching the ventilator off, even given family time to say our goodbyes. As a family, we were talking about a funeral & it is absolutely heart breaking to even think about it again. The night before we decided to switch the ventilator off, a true miracle happened. Baby girl started breathing for herself, proving us wrong & showing the determination of a true fighter. She was meant to be here with us!
Her MRI shows global damage across her brain, we were told that it was one of the worst baby brain scans they had seen for a while & if shown to another neurologist they would think it was a brain scan of a dead baby. She will be a complete vegetative state, not breathing for herself, no suck & swallow or gag reflex & generally no quality of life. We kept our hope, faith in God, positivity & showered her with love which we believe got her through & continues to. She proved everyone wrong & is still doing so. She has suffered for the first year of life with severe reflux & gastro problems & other illnesses. She has recently been diagnosed with Cerebral Palsy, Epilepsy & CVI (Cortical Visual Impairment) but we are not sure to what extent until she is older. She is doing very well with her feeding and proving doctors wrong continuously reaching inchstones towards her milestones which we are sure she will meet.
We want to make sure she reaches her maximum potential & we are ready to go to any lengths to make sure this happens. She receives physiotherapy, OT & speech & language therapy from the NHS and only physio is most consistent. It’s a ‘wait & watch’ game for the doctors in this country but they need to realise early intervention is key to train an infant brain. Example of this- Ambi was born with no suck reflex, we were told she wouldn’t take a bottle. In NICU we offered her a bottle daily, she went from taking nothing to being full bottle fed in 3 months of trying every day, her brain had made a new pathway & learnt.
I do physio, play therapy, sensory play, massages & much more with her daily as well as finding time to just let her enjoy being a baby. Neuro plasticity is something I have been researching, a phenomenon which promotes the ability for the infant brain to create new pathways, the parts that haven’t been damaged to help the parts that have been. Brain damage in children with cerebral palsy is a time-limited event. Whatever caused the problem – a bleed, a stroke, an infection or a missed bit of early brain development – it is not progressive. The damage is what it is. This means that babies have an enormous advantage and actually more potential for improvement than an adult with a similar amount of brain damage. The damage may stay the same, but the brain keeps growing and maturing.
We have been looking at many alternate therapies which the NHS do not provide. One of the ones we started in September is hyperbaric oxygen therapy where she receives 100% oxygen at 3 times the pressure we get it. It helps generating stem cells in her brain that are currently lying dormant as well as creating new pathways in her brain. We have seen a huge difference already in her alertness, eyesight, sleep & it has strengthened her immune system. We travel to Morecambe (1 hour drive) 3-4 times a week for this therapy however it is starting to prove difficult as she doesn’t like the car journey & it means we have a lot less time for other therapies & ‘normal’ baby time. The journey also ruins her routine. But it has helped so much! This is why we want to raise enough funds so we can buy our own hyperbaric oxygen chamber to keep at home, giving Ambika the therapy she deserves but also time to thrive in other therapies. A home chamber can cost anywhere between £10,000-15,000.
Eventually, we want to take Ambi to Panama for stem cell treatment which we believe will really help her, however it is an extremely expensive treatment, starting at £20,000. The amount we want to fundraise will enable us to do this for Ambika as well as pay for our travel & hotel costs for 4-6 weeks. After stem cell treatment it is highly recommended for the child to do an intensive physiotherapy course which is also expensive. We want to do the NAPA intensive course (in LA) which consists of 60-90 hours of vigorous therapy in just 3 weeks.
On top of this, we want to fit in extra private physiotherapy sessions weekly (starts from £80 per hour) & buy the equipment we believe would really help her. There are also many other alternate therapies out there we have researched and want to try like Snowdrop in Devon, ABM, MNRI, osteopathy, chiropractor sessions, cranial sacral therapy which we believe will help Ambika heal. She also takes supplements which help her digestive & immune system hugely that aren’t available on the NHS, these cost approx. £100 every 2-3 months. We have also started her on CBD oil which work towards controlling her epilepsy, costing £80 for 30ml.
After working it out, this is the amount that would be more than beneficial to ensure Ambi can reach her potential & lead the best life she deserves. It would mean the absolute world to us if you could help us heal Ambika by donating anything you can to raise funds that will 100% go to Ambika’s care. Along the way, me and my husband & other family/ friends will be doing different things to help fundraise (a possible sky dive may be on the cards) so keep your eye out for the updates!
We realise how large the amount is & it could take a while to reach our goal but we know we can do it & it would mean everything to us. To take matters legally it could take years, up until Ambi is 18 years old & we don’t want to ‘wait & watch’ how her ‘problems’ pan out. Brain plasticity is at its prime in the first 3-5 years of a child’s life which is why we want to raise money now. Seeing our daughter heal is all we want. How ever big or small the donation, please say a little prayer for our Ambi which is what will heal her ❤️ Faith, love & hope always. Thankyou so much,
Love from a very grateful & emotional Mum & Dad x
- Sita Kaur
- Halima Mahomed
- Anu Kumar
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