'I can do anything'

Henriette Lamprecht



She is a confident, happy, healthy, beautiful and smart young lady.

Ten year old Namasiku speaks well, is in grade 4 at the Windhoek International School and is learning new things every day. She swims, rides horse and tries to kick the ball during mini soccer practice at school. She loves her sisters, her brothers, her family, her friends and her dogs Beijos, Bean and Bambino, says proud mom, Eline van der Linden.

“We all love her back to bits. She has great compassion for people and animals and she surprises us often with new skills, funny jokes and stories. Her belly-shaking laughter is contagious and makes all of us a little more happy.”

Namasiku was born in 2007 with an extra chromosome and was diagnosed with trisomy 21, or Down syndrome.

“We had to adjust our navigation gear a bit but now, 10 years later we can say with a happy heart that while it was not easy, it was also not that difficult to raise our Namasiku into a lovely little lady,” Eline says.

Early intervention and anticipating medical problems before they became an issue, has been key in their journey. Other important aids have been consistency and perseverance.

“We never gave up on Namasiku and we continued to do what was best for her, day-in, day-out and are still doing that.”

Eline admits there definitely was no magic bullet. It was a combination of hard work, lots of reading and a true collective effort by her children, their nannies, Namisiku's teachers, the therapists, their doctors and herself.

She emphasices that it is important for any mom, dad or caregiver of a child with a disability to take charge, and be the child's voice and advocate in the early years.



It takes a village

“I was the conductor of an orchestra. I made sure Namasiku got the best care from the different people in our village. If it takes a village to raise a child, it takes a super village to raise a child with Down syndrome.”

When Eline started reading up on Down syndrome – basically as soon as she got home from hospital – she stumbled on the term “early intervention”. This term was used in nearly all articles she read and videos she watched. Another prominent term was “little steps, big jump”.

Early intervention meant they always had to be a few steps ahead. Checking if Namasiku's heart did not have a hole in it on the day after she was born, was one such intervention.

“I had no idea why we were sent for a heart sonar. When the technician exclaimed with a sigh of relief: 'Thank God', I asked him what he was thanking God for. Only then he told me that thankfully, Namasiku did not have a hole in her heart. 'A hole in her heart?' I exclaimed in return, as I was shocked to find out that this had been the purpose of the heart sonar in the first place!”

Half of children with Down syndrome will have a hole in their heart, Eline explains. In most cases this hole can be repaired with simple surgery; in other cases a more complex surgery has to be performed while yet in other cases, the hole closes on its own.

Eline took the first step on the medical journey with Namasiku on day 2 of her life.

“Make sure a medical professional checks you baby's heart very early in life (0-3 months). Have the baby's thyroid tested as sometimes the thyroid works too slowly, which makes your baby lethargic. There are natural remedies to boost thyroid function. Have a specialist examine your child's ears early in life and especially when the child suffers from ear infections or is not responsive or lazy. Follow-ups are recommended. Take your child for regular eye tests. You may start as early as 2 to 3 months and agree with the optometrist or eye specialist on a follow-up schedule.”

She adds: “Make sure that when your child catches a cold, you act immediately. Most colds develop into a more serious illness if not treated. It is better to prevent pneumonia than to treat it.”

Other early medical interventions had to do with Namasiku's hearing and eyesight, Eline says. Children with Down syndrome typically have small ears and a smaller ear canal causes ear wax to build up.

One may think one's child is non-responsive or lazy, but in the meantime he or she may just not be hearing so well due to built-up ear wax.

“I really felt quite inadequate when I realized I did not have Namasiku's ears checked in time. In fact, she could not hear us well and the Ear, Nose and Throat (ENT) specialist had to remove wax from her little ears.”

After a few more ear infections, the doctor suggested inserting grommets to keep the ear canal open and free of wax. A wonderful solution, except that the grommets fell out a few times.

“I used to smell Namasiku's ears and would know exactly when a grommet was no longer there. We had them replaced a few times and eventually she no longer needed them, as her ears had outgrown the problem.”

As for Namasiku's eyes, Eline says she was squinting quite a bit as a baby. An optometrist who had done a course in helping young children with disabilities, gave some simple exercises for Namasiku's eyes.

The exercises saw an immediate improvement and Namasiku started to focus much better.

“She had spectacles for a while but later we found out that the eye specialist who had prescribed them, had done so guided by his own preconceived ideas on what children with Down syndrome need and not on the basis of Namasiku's eye condition. Fortunately, she could stop wearing the spectacles. We had consumed quite a few pairs in a short span of time as they broke or went missing often!”

Another major early intervention had to do with nutrition and muscle development. Eline made every effort to breastfeed Namasiku as she read this would train Namasiku's mouth muscles. Most children with Down syndrome have weak muscle tone (hypotonia) and ligaments that are too loose (ligament laxity).

“This means our kids are quite floppy. Each and every muscle in Namasiku's body had to be trained. Since the tongue is a muscle, we had to work on that too.”

Namasiku's tongue was mostly hanging outside of her mouth when she was little. After much intensive training, her tongue is mostly inside her mouth now, and she closes her mouth nicely.

According to Eline, breastfeeding was key, so too all the little exercises the speech therapist recommended to train Namasiku's tongue. With a well-trained tongue Namasiku started making sounds early in life, learned to speak quickly and now talks a lot and sings her heart out while listening to songs on her iPad!

Coming back to nutrition, Eline explains that breastfeeding was not only good for the mouth muscles, but also helped to build up Namasiku's immune system.

“Our children are born with a compromised immune system. That is why our children are so often sick with snotty noses, persistent coughs and sometimes pneumonia and other more serious colds and flu-related complications.”



Sugar a no-no

In addition to breastfeeding, Namasiku has been taking an immune boosting supplement. No chemicals, just natural ingredients. It is advisable for all children with DS to take an immune booster as it will prevent many illnesses.

“The healthier our kids are, the more time they have to develop their body, and their minds,” she says.

To understand the brain, it is important to understand the role of sugar in the development of the brain, Eline explains.

“Sugar stunts brain development. Knowing that are children are developing more slowly, there is very good reason not to give them sugar in the first years of life and to limit sugar intake going forward. If the brain already develops more slowly, why make it even slower by adding sugar to the mix? Our children also don't react well – in fact all people – to the many colourants and flavourants often added to sweets, cooldrink and sugary foods.

“Moreover, sweet food tends to make our children fat as most kids with DS have a tendency to put on weight more easily. So as for food, really just one very good piece of advice: keep your child away from sweet, sugary things!”

Food can however, also do a lot of good for children. This includes fruits, vegetables, fish, chicken, meat, mealie meal and oats, yoghurt, raisins, rice crackers, natural flavoured chips, potatoes and rice.

“I started reading the labels of all the food items I used to throw in my shopping trolley and quite a few are banned from my shopping list now. The amount of sugar that is packed in simple cereals, even in those for babies, is just too much.”

Instead, the family started cooking their own porridge and mostly cook their own food.

“Takeaways are convenient, but we don't know what is hidden inside in terms of colourants, flavourants, and taste enhancers like MSG. When you read the labels, you will be surprised how much sugar is packed in the food we buy from the shops. Even in spices for meat and chicken you will find sugar. We try to stay away from sauces out of a packet, from instant noodles, from precooked meals out of cans or the deep freezer. When you cook yourself, you know what goes into your food and that will keep your child with DS and the rest of your family healthy.”



Determining impact

According to Eline, the medical experts who helped raise Namasiku made it very clear that physical health and development would have a determining impact on her intellectual development and learning abilities.

An example is that Namasiku was floppy when she was a baby. All she could do was lie on her back and look at the ceiling.

“We put a colourful mobile above her cot but her immediate experience was still very limited. As we exercised her little body, she was eventually able to sit. All of a sudden her world became much bigger and much more interesting.”

The same happened when Namasiku learned to crawl. This was fun as she could now explore the world around her. All her senses were stimulated. With loads of effort from her physiotherapist, her nanny who would come along to the sessions to learn how best to exercise Namasiku, Eline, her other daughters, and the Happy Strap that kept her legs closer together, they got Namasiku to walk by the age of 19 months.

“This was a true victory and Namasiku's world expanded to its full capacity. She took control of her environment and her brain received loads of new impulses.”

All this stimulation made her brain grow and ready to receive new information and to learn new skills each day.

Eline says Namasiku was also offered foods of different texture, taste and colour every day.

“I am still conscious of packing interesting food in her school lunch box. The different texture, taste and colour stimulates not only her appetite but also her brain. Her brain is in top shape and that is why she is able to go to school and learn, as she enjoys her friends and social environment.”

Their journey with Namasiku continues and they are all super excited to be part of it, says Eline.

“None of us sets limits for Namasiku. She shows us the way through many little steps and big jumps under the motto #icandoanything!”

• www.downsyndromenamibia.org; [email protected]; [email protected]