Raising a kid with Down Syndrome

Looking at Karey, her beautiful face does not betray the emotional turmoil and financial burden she's been through. She is all smiles when we meet her. Perhaps talking about her daughter with Down syndrome was going to be easy.

As Karey opens up about her journey, it's clear that her life has been anything but easy. Over the years, she has had to turn a deaf ear to all the mean things people told her about her daughter.

Some accused her of smoking while pregnant, taking too much coffee, while yet another told her it was as a result of mismatched intelligence levels with her husband.

"Either you or your husband is extremely dumb," the person said. Karey's mind would often be filled with so many questions. Why her? Why her daughter, who was her first child?

Ciiru’s story

Karey had no idea there was anything different with her daughter after she was born. She learned that Ciiru, her daughter had Down syndrome when she was a month old during a hospital visit to treat her blocked nose.

"I broke down and started crying uncontrollably," says Karey of the time the doctor told her about her daughter's condition. She remembers reading quite a lot of negative stuff on the Internet regarding DS and she was sure her daughter's fate was sealed.

"Then everything started going downhill," she narrates. Her daughter lost weight consistently and Karey with her husband, Harun were sure their baby had a heart problem. Fortunately, an echocardiogram (Echo) proved them wrong though set the young couple Sh25,000 back.

They had to pay for any hospital expenses in cash since all the Insurance companies denied their daughter medical cover owing to her condition. Ciiru's medical expenses were quite high as she had developed sleep apnea because she has a flat nasal passage. She had breathing problems, which aren't too pronounced now.

Karey is forever grateful for meeting Eva Gichuki-Migadde, who also has a daughter with Down syndrome. Eva introduced Karey to Dr Rashnik Ghalay, who clinically confirmed that Ciiru, indeed, had DS. "There was no way we were going to afford the Sh15, 000 consultation fee," confesses Karey.

But as fate would have it, Dr Rashnik offered to be seeing the little girl free of charge! She even gave the couple a two month's supply of powdered milk. She had explained to them that their daughter was losing weight because she was unable to breastfeed due to low muscle tone, which is usually associated with children with DS.

She took her daughter for therapy from three months but it proved too expensive and was draining the young family resources fast. Luckily for her, her friend, Eva organised to have her child's therapist visit Karey at home and also helped with the payments.

"It's not been an easy journey but it's manageable," confesses Karey. Sometimes the challenges have been overwhelming. She remembers when they had to look for a school for Ciiru and everyone turned them away when they mentioned that their daughter had DS.

Karey confesses to crying a lot when overwhelmed. Initially, she was worried that her daughter would not live her life to the fullest but now with more knowledge and after meeting other kids with DS, she is encouraged. She was overjoyed when Ciiru finally learned to walk at two years and is happy with the progress she is making albeit slow.

Ciiru's therapist says she's doing well. She has learned some life skills like feeding herself and is learning how to communicate using sign language. Her mother still wonders where her daughter will attend school, once she is old enough or whether insurance will ever consider kids with DS.

Karey is grateful that this journey has been made easier by her husband, Harun and her family who love her daughter. She cannot thank her cousins Rose and Eva enough for helping out financially with Ciiru's therapy.

Ella’s story

Karey's guardian angel, Eva Gichuki-Migadde is a wife and mother of three. The entrepreneur and founder of a non profit organisation – My Ella Down Syndrome Foundation (MEDSYF). Eva's second child, Ella, was born with Down syndrome (DS).

"The main objection of the foundation is to create awareness and solutions for children in Kenya born with DS," she explains. "I realised Ella had DS the moment she was given to me, because I recognised the distinct facial features, especially her almond shaped eyes and flattened nasal bridge," says Eva.

Ella, now five years old, goes to a mainstream Montessori kindergarten in Nairobi. Thanks to early intervention (therapy) from the age of four months, she is a very independent girl. She's potty trained, feeds herself, does arts and crafts independently, can count and identify numbers 1-20, and is now attempting to read on her own.

"However, when attending school, she is accompanied by a shadow teacher, someone to assist her with some of the activities they do in class," explains Eva. Ella has been fortunate to not receive any discrimination in school. However, this is not the case for every child with DS.

"Just recently, my god-child and her parents had an experience in which the principal of the school didn't want it known that their child goes there. Her fear was that other parents would withdraw their kids from the school," says Eva.

Ella's siblings, especially her brother who is four years older than her fell in love with her from the day she was born. He was just excited to meet his new born sister and have a playmate at home, just as any other child would.

"However, as he grew older, he kept asking questions and comparing her growth and development to those of other kids he knew who were born roughly at the same time. By age seven, I had to find a way to explain to him in a way he could understand without feeling sorry or too worried about Ella," explains Eva.

And before they knew it, he was telling all his friends about Down syndrome and his friends would make comments like "she has such beautiful eyes". They melted my heart because that had always been my fear from birth - that they wouldn't understand and they would treat her differently.

Because of early intervention, Ella only depends on us to help her take a bath and get dressed. She enjoys stories so we read to her, however she has started a reading programme and she's already got approximately 120 words in her word bank.

Fortunately, Ella has not had major health complications associated with Down syndrome, however, she is extremely short sighted and wears prescription glasses. Occupational therapy has helped to reduce the development delay and now Ella has caught up with her peers.

Another challenge she faces now is her speech. Ella can read a sentence of 10 words, however, constructing it and applying it into conversation is a little harder.

"She has not had speech therapy sessions to date but can communicate effectively. We do not have enough practising speech therapists in Nairobi and that makes it harder for affected families," confesses Eva.

The most misunderstood thing about raising a child with DS is that according to insurance companies it is a chronic disease, according to some cultures it is caused by infidelity, alcohol,"jicho mbaya" or some other misconception.

Unfortunately, for the parents who have not been advised accordingly, their child "will never" achieve some milestones. "Children with Down syndrome need love, care and support just as much as any other typical child. How you treat your child is exactly how society will treat your child," says Eva.

Occupational therapy simply works like extra tuition to assist with them achieving their milestones. It is imperative for our special babies to have that constant support and it is only temporary. Therapy is expensive but with support from government and NHIF, these costs can be reduced and more available to families countrywide.

However, over the years I have learned very valuable lessons that I would like to share with other parents," says Eva.

She shares some nuggets for parents with children with DS:

• I learned that by putting my baby first, they grow in love and confidence and develop just like typical babies. That way they live a regular life, without noticing all the dos and don'ts that society expects them to live up to.

• I also learnt that my baby "will and can" do almost anything a typical baby can. She took her time doing it but with our care and support of early intervention, she has hit most of her developmental milestones with grace.

• Every day I see the beauty in Ella's face and I no longer see the DS features. I realise that there will be good and bad days.

• I learned that due to a lack of awareness, there are people to this day that call children with DS abnormal and retarded. Children with Down syndrome are taking part in mainstream schools, they're designing and cat walking for New York fashion week, they're teaching in schools in Iran and they are founding special needs centres in Nairobi.