Sat | May 27, 2017

Taking my son through …A long, hard journey with Dandy-Walker Complex

Published:Wednesday | September 17, 2014 | 9:00 AM

My three-year-old son, Kahliel, was diagnosed with Dandy-Walker Complex (DWC) earlier this year. It has been a difficult journey, to say the least, which began when he was only six months old. But I must say, I do not regret having this little boy in my life. He has given me a new outlook on life, as we journey together, and I continue to hold on to hope.

Dandy-Walker Complex is a congenital brain malformation involving the cerebellum and the fluid-filled spaces around it. This condition is characterised by an enlargement of the fourth ventricle (a small channel that allows fluid to flow freely between the upper and lower areas of the brain and spinal cord), a partial or complete absence of the cerebellar vermis, and cyst formation near the internal base of the skull.

DWC represents a continuum of developmental abnormalities, which includes Dandy-Walker variant (DWV), Dandy-Walker malformation and mega cisterna magna. It may also be associated with developmental delay and malformations of the heart, face, limbs, fingers, and toes. DWV represents the mildest form of the complex. DWV is said to affect one in 25,000 to 30,000 persons, and very little is known of this condition.

Kahliel was diagnosed as having DWV.

Interestingly, there are persons who may be going about their regular day-to-day activities unaware that they have this condition until they become adults or are required to undergo a CT Scan or Magnetic Resonance Imaging (MRI) for some other complaint/s.

There is no known definitive cause for this condition; however, medical experts theorise that it may be caused from stress and the consumption of alcohol. I rarely consume alcohol, and never did while expecting.

MISDIAGNOSED

I started noticing that Kahliel was having development challenges at around six months. He was not doing the things I knew other babies were doing. He struggled to sit up on his own, and was only able to accomplish this at 11 months. He never crept; however, he walked at 15 months, which is still within the range of normal development.

His fine motor skills were also delayed (still is), being unable to grasp small objects with two fingers until he was almost two years old. By then, my son's vocabulary appeared to be quite limited, and now at three years, it still appears limited, as he uses approximately under 50 words, and rarely makes a sentence.

Then there was the stiffness in one of his hands, again missed during medical examinations, until I made mention of it to the occupational therapist, who wondered how it could have been missed. Experts say that this is also a condition associated with DWV, though it can be related to other medical issues.

Last year, acting on the recommendation of family and his pediatrician, we took him to see a developmental specialist, and after three evaluations, she stated that she was unable to give a definitive diagnosis, but noted that some of his behavioural patterns were in keeping with the autism spectrum.

I remember quite vividly being told, based on a report from one of the developmental specialists, that Kahliel does not make eye contact. A very puzzling observation, because, on meeting Kahliel, two things stand out: his pleasantness and his responsiveness to people, always making eye contact. Sometimes, I jokingly call him 'dry-eye boy'.

We have seen at least ten doctors in Jamaica, which includes four pediatricians and a neurologist. On not one of these occasions was the term Dandy-Walker Complex ever mentioned. I am still amazed at how this could have been overlooked.

He was placed in occupational therapy, as recommended by the development specialist, neurologist and pediatrician. Not knowing what was not right with our son, we made the decision, after six months, to discontinue this therapy.

After having three seizures, an electroencephalogram (EEG) was performed on him, which came back with a negative result. The decision was then taken to have him undergo an MRI, which showed that his brain formation was in keeping with that of DWV.

I was devastated by the news and sat in his bathroom and cried, wondering why my child. But why not my child? I got up being grateful for the new information I now had, which would be so beneficial to us now and how we proceed on this journey, knowing where my child has come from and the milestones he has accomplished.

As a mother of a child with development challenges, I take no milestone accomplished for granted. They are all a big deal to me. It is like winning the lotto. I know Kahliel will develop enough to be functional and make a meaningful contribution to society.

Some may say I am deceiving myself, giving myself false hope. An example: I went to a meeting for parents of Pre K students recently, and a parent asked me "So, where will Kahliel be for September". I said, "He will be joining Pre K", which I thought was obvious, due to my presence at the meeting. Her expression suggested, "This woman is kidding herself".

But you see, I know where Kahliel is coming from, and no one else knows our story in totality.

IMPORTANT TIPS

I am an educator, not a medical expert; however, I wish to encourage parents to have their children tested/evaluated (under the guidance and referral of their pediatrician) by the relevant professionals once they realise abnormal behaviour/s and development.

Remember, knowledge is power, and knowledge will help to determine the steps you take in helping your child progress.

It is important that you:

Do not be ashamed of your child, who may not be developing as you had hoped/expected, always remembering he or she is a human being who has a right to be here.

Do not hide them away at home, allow them to socialise as much as is possible, regardless of the stares and whispers. My coping strategy for the stares and whispers is to immerse myself totally into his world.

Educate those whom your child has daily contact with, about his or her condition.

Provide your child with a lot of emotional support. Love your child unconditionally, even when it appears he or she does not understand - this, I believe, is critical to his or her development. I yearn for the day when Kahliel will just freely, without prompting, hug me tightly. I know he knows I love him, and he knows how special he is in my world, just by the look in his eyes when he looks and smiles at me.

Reward him/her when he/she does things the expected way or have made improvements.

Do not judge. Many persons with special-needs kids are often blamed for the challenge their children face, and my experience has been no different. No one will ever understand the pain of the mother of a special-needs child until you have walked the journey.

Refrain from the use of corporal punishment. In almost all cases, this method of punishment does not, I repeat DOES NOT, result in a discontinuation of the undesirable behaviour, but instead may leave your child withdrawn and angry.

Parents, look for signs of abuse, use bath time to examine your child's body; take the responsibility of bathing your child at least once per day (regardless of how tired you may be). Remember, depending on the level of development delay, your child will not be effective in communicating with you about abuse.

Most of all, accept your child for who he or she is. No one can make me smile as much as Kahliel does. No child is a mistake, though we may make many mistakes while parenting.

I do not know what the future holds for Kahliel. Some days, I wonder when I am going to break; however, I continue because I do not have any other choice than to be the best parent I can for my son. And with information, we will take it stage by stage, having no regrets, knowing that he was given to me/us for a purpose, and that God will provide for us through many media.

Names withheld by special request of the mother

The proud mom of a son with development challenges.

Dandy-Walker Complex is a congenital brain malformation involving the cerebellum and the fluid-filled spaces around it.