Blaize CP story

 My name is Gertrude Mso Njiru.. Mother to two boys, Brighton 8yrs and Blaize 4yrs..  

*Champs profile* 

Name: Blaize

Age: 4yrs

Milestones: Smiling and laughing 😘

Cause of CP: prolonged labour.

So my story is no different from what I have read here.. Blaize is my second born..

I had a smooth pregnancy, attended 6 monthly clinics, so you can tell I started them early enough, had ultrasound at 6months and at 2days to delivery and everything was fine.. I didn't expect to have a difficult labour since it was sail-through with my my first born..

I went into labour on a Wednesday, at around 10am, I delayed a little bit so I don't have to wait long at the hospital.. I leave home for the hospital over 50kms away at around 1pm, I'm admitted at around 5pm with 4cm dilation.. I dance to the labour pains all night long and all day long, what made matters worse was being induced and I was already in labour 😭.. I gave birth at 9:30pm after over 35hrs in labour, my baby didn't cry, his apgar score was 4:5:6 and his diagnosis was severe birth asphyxia.. He never suckled too.. I never knew what I was up against when I left the hospital, I thought after the three weeks at the hospital, my baby would grow "normally" but no. At 6weeks a doc advised that I should take my baby to a paediatrician failure to which he(baby) will be a cabbage 🙆.. I obeyed, took the baby to a paed and i was advised to book him for therapy immediately which I did and we still attend therapy todate... 

It hasn't been an easy journey especially mentally.. I sometimes have episodes of self blame, hatred, denial, sadness but above all his smiles give me a reason to bounce back to reality and rejoice for God's grace is sufficient.. Acceptance is a journey, one step at a time... The hardest part in this journey is recurring pneumonia attacks, convulsions and poor feeding... I would advise every parent with a special needs child to join a support group, it helps one cope otherwise you would think you are alone but no, we are many..

Elly's CP Story

 

“My name is Rose .A. Angira, mother of a little boy Elly with cerebral palsy. Elly was born on 13th July 2016 and just like any other parent i expected to take home a bouncing baby boy, but things turned in another way.

I am one of the lucky mothers who had a very smooth pregnancy, except for a few days when I climbed mount Kilimanjaro while 3 months pregnant. I was active all through the nine months.

Elly suffered severe brain damage during birth, his head got stuck, he did not cry and was blue. He spent the first week of his life in the intensive care unit undergoing oxygen therapy, and 3 days in the newborns unit for phototherapy because he had developed jaundice.

At home Elly cried uncontrollably and could not breastfeed, I later learnt he had no suckling reflex. For 7 months he grew up on baby formula by spoon feeding.

From his time of birth, I felt something was not right, the hospital only told me he had breathing problem and that is why he was undergoing oxygen therapy, nobody told me about brain damage. At 4 months old Elly had not smiled, no eye contact, no head control, and had epileptic attacks. My journey to several specialists began, to the optician because I thought he was blind, to the pediatricians, neo natologists, and neurologist for his epileptic attacks.

One of the pediatricians then advised me to see an occupational therapist, I had no idea who that was but went. It was the therapist that broke the painful news to me, that my son had a condition called cerebral palsy, we had a long talk and he even told me what to expect. Denial, grief, hatred, anger, hopelessness were the emotions I experienced, I blamed and cursed everybody including God for giving me a child with a disability, I lost hope in everything.

I had dreams for my unborn child, I even had an idea of how I was going to raise him. When the diagnosis happened it was a big hit, many at times I locked myself in the house with my son, I cried and then hatred towards people grew bigger. I hated seeing my friends posting their kids and celebrating their milestones. I could not get the courage to talk to anyone, I hid my son from many people. Every time I looked at my son especially during the epileptic attacks, the pain of watching him suffer made me go down on my knees and asked God to take him, I prayed for him to go and rest instead of suffering. When it was too much I had suicidal thoughts, I thought I would find peace in death, with my son, I nearly did it.

The stigma made it worse, I once heard some two women discuss behind me that I might have had a wrong diagnosis from the witchdoctor that affected my son, to some I used my son for rituals, a pastor once asked me to go to church and confess my sins so that my son could be healed. All these things, the thought of how the society viewed disability made me more depressed in addition to denial. Friends and family kept asking why Elly had not achieved this or that, others even blamed me, I would smile on the outside and act normal, but at home I would re-think and break down.

We had therapy sessions 3 times a week, there I met many parents whose kids were even older than mine, I was curious to know more about this condition and the stories of how other parents managed, I engaged the therapist so much and when my son turned two years old I finally reached my Acceptance destination and even went public about it. If there is one thing am grateful for, its moving from denial to acceptance.

My son inspired me to want to help other parents who were still living in denial, and to help them understand and accept their children.

Children disability in Kenya is still perceived as a curse or sins of the parents and this inspired me to want to create more awareness to help the general public understand. That’s how I went public and even started a person blog to write about Elly’s journey and special needs parenting.

Elly will be 5 years old in July, he still has not achieved much, his head still lags, still sits with support, no eye contact, cannot track, cannot bring anything to his mouth, (cannot use his hands). In short he is fully depending on me or others, Elly can absolutely do nothing for himself, we feed, bath, move him around, scratch him etc and I know the journey will get tougher as he grows and I have fully accepted his condition and the parenting responsibilities that will come with it.

Elly joined a special needs school this year and i am hopeful that he will somehow improve mentally, socially and development wise.

I love my son and I am raising him exactly the same way I would have raised him if he didn’t have CP, I refuse to deny him his childhood and this is something I encourage most special needs parents to do. There is life after diagnosis.”

Mush CP Story -CP After birth

 

“My name is Omochonwen Bello, I come from Lagos state in Nigeria.My little boy Mush was born perfectly healthy and hearty. I had a safe pregnancy and delivery too. It was a great joy to take home a bouncing baby boy. Like any other parent it was my joy seeing my little Mush achieve his milestones, My son was able to sit, to crawl, stand, play with other children, break things at home , make a few steps and even utter some words. But my joy was however short lived.

Our story changed when he had febrile illness at 9months, at that time there was an outbreak of meningitis but with the spinal tap result the fluid was clear so it was ruled out. He was in coma for more than two weeks and when he became conscious his brain was damaged and he lost all the gained milestones, he was now like a newborn child again. Mush could no longer do anything after he was discharged from hospital. My son lost his smile and could not even wave, his growth was affected that he did not grow any tooth for until after like 7months after he was discharged. He lost his chewing and swallowing ability too and only depended on puree.

Hospital became our second home because feeding him became difficult, sometimes when feeding him the food will pass through his nostrils which results in aspiration and difficulty in breathing and seizures.

Mush was then diagnosed with Spastic cerebral palsy, a disability that affects a person’s movement, posture and muscle tone. Since his diagnosis he fully depends on us to do everything for him, he cannot sit, only sits with support, he cannot crawl etc. My child’s vision was also affected and he cannot see, he has cortical visual impairment. His chewing is slowly coming back, though he still eats only blended or mashed foods.

It has not been easy for me as a parent, I never imagined ending up as a special needs parent or my child who was just healthy ending up disabled, with time I slowly accepted, though at times it still hurts me to think of my child who could now be in school or outside playing with the rest is now disabled and I am forced to take care of him on a full time basis. Just like any other parts of the world, the stigma here in Nigeria is worse too, people still believe it’s a curse or witchcraft."

You can follow Mush on instagram @cerebralpalsy_diary

Emmanuel's CP story

This story is a case of CP during birth, this unfortunately this is the most common one in Kenya, too much negligence in our labor wards. CP at birth happens when a child's brain lacks enough oxygen, can be due to prolonged labor as well.

"My name is Gladys Chelimo from Eldoret here in Kenya. My son Emmanuel developed CP at birth. This was as a result of prolonged labour(even after being induced) after exceeding the due date by about 2 weeks. The doctor said it was caused by Asphyxiation which causes damage to the brain. I remember the shock as the doctor broke the news to me a few hours after delivery that my baby would have a challenge attaining his milestones and i might have to raise him as a special needs child... i was numb, I couldn't even cry even for the two weeks he was in the Newborn unit. By the time we left the hospital he still wasn't able to breastfeed, he couldn't even cry( he did cry at about 2 months).His convulsions were mild and lasted about a week.

Although I knew from the start what to expect nothing really prepared me for this journey. I always told myself I had accepted it but deep down I knew it wasn't true. I was always paranoid and went to the hospital almost every week thinking he is getting sicker. Waking up in the middle of the night just to confirm he is still breathing fearing I might have covered his head and suffocated him.

He is totally reliant on us to do everything for him and the scariest moments are when he is not feeling well because it takes him back from the milestones he has achieved.

He is 3 years old now and hasn't quite achieved many of the milestones but we take one day at a time and just pray for good health. We continue with therapy and pray for the strength to fully accept things as they are. I shower him with all my love and I think that's the best thing we can do for our warriors."

353Mclins Cheusi Fitzgerald, Koi Elsa Jesse and 351 others

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The Late Jasmine's CP story

“ My daughter would have be turning 5 years this year, she was the sunniest child I had ever seen, Her presence was angelic. Jasmine was her name. I gave birth to her in my first year in campus and though I wasn't prepared to be a parent, I looked forward to raising my little princess. I gave birth to her at Coast General hospital after 4 days In labour something I later was told shouldn't have happened. She suffered from severe birth asphyxia and not enough oxygen supply got to her brain. All seemed well and I enjoyed the early months of motherhood apart from the sleepless nights we had where she always seemed to be in pain and would cry for hours. Being a first time mom I didn't know what to expect and I noticed a lot of odd behavior that when I raised to the doctors they would tell me nothing was wrong. Jasmine's life always seemed like she was in pain since we didn't know how to go about raising her. We didn't have the tools to raise her and being her mum was a pain in my heart, it still is, knowing that she wouldn't be like any other child but I still had hopes. She would get sick every single month and you can imagine the agony a 19 year old mother went through seeing her child in a sickly and weak state. I went into denial. I refused to believe that my child had cerebral palsy which she was diagnosed with after a few months in therapy. I had just finished my 3rd year exam when I got a call that my daughter is gone. I still don't know the cause of her death. One thing I am grateful for is that she isn't hurting no more, She is at peace and that I got to meet an angel in real life. I learnt compassion from raising her, what true love looks like. I was a mother to a child with special needs for a reason and I intend to tap into that for the sake of young mums like me.

This is a wound that I am working on healing. There was a time I blamed myself for her condition and her death but I know God isn't such a sadist to give me a child and take her from me without it serving a purpose. This year I will be executing a project that targets young mums, more so those raising children with special needs and I don't know if this is a sign but you came just at the right time to remind me of my calling. To find strength in that moment of weakness and to use my space and voice to help and inspire those who are in the same position I am. You are a story of victory. I know it isn't easy but you give us hope”

71Maureen Atichi, Maseki Stephanie and 69 others

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