Clefts: A mom's perspective on what professionals should know

Canada · CPD points & talks · Psychologists

These are some of the things medical professionals need to know about clefts:

1. I am a cleft expert (and so are other parents of cleft affected children)

As a professional myself (a lawyer) I need to know the reliability of the information I am given and that means the reliability of the source. So here are my cleft credentials so you know why you should read on.

I am a cleft expert.

What makes me an expert?

As a mother of a child with a cleft lip and palate, I live and breathe clefts and the effect of clefts every second of my life. So even though many professionals may know a lot about clefts, or more correctly know about clefts in relation to their particular speciality, I have to deal with all of the specialities and live all the consequences day in and day out. So, for example, there are many ear, nose and throat specialists that see kids with clefts (and thank God for them - they are my saviour). These ENTs know a lot about clefts and the physiological effects they have on the ears, nose and throat (and possibly other effects too). But they probably only see a cleft occasionally and in the case of a cleft clinic which exists in some parts of the world, then maybe there is a weekly or monthly cleft clinic day.

So, for the most part, a specialist would only possibly be spending one 15 or 30 minute appointment, per week dealing with a cleft child. I deal with a cleft affected child all day long. I deal with the feeding, medical appointments, daily dental taping, ear infections, tubes/grommets, surgeries, post-op care, administering medicine, hearing difficulties, respiratory issues, low immunity, effects of anaesthesia, weight problems, speech problems, therapies, sleeping difficulties, trauma, bullying and my favourite of them all, educating teachers, child minders and medical professionals. The list goes on…but you get the point.

Malcolm Gladwell in his book “Outliers” says it takes 10 000 hours of deliberate practice to become an expert. That is approximately 416 days or a year and 2 months. So, on all accounts and with my 3-year-old son I am a cleft expert. And in my almost 3 and a half years of dealing with this, considering I started the journey at 20 weeks of pregnancy, I have found the bulk of the medical professionals I have encountered rather ignorant and insensitive in relation to this huge medical challenge that me, my son and my family have to face daily.

What this means is that sometimes YOU need to listen to what I have to say as a mother (or what the child has to say, age-dependant). And don’t tell me that what I am saying is impossible or untrue. And even if you don’t buy my expert argument, I am certainly the most in-the-know about my life and my child. So, please listens!

Also to be factored in, is the fact that I have to take the child home, I have to administer medicines and deal with their side effects and continuity of care is my responsibility and my effort and sometimes a huge weight on my shoulders. You are often putting more on my plate and failing to recognise what impact your advice has on our family as we leave your office door.

2. Clefts can be genetic OR NOT

For many of us, like me, clefts do not run in the family. My son is the first one in our extended family to have a cleft. Most of our family members had never even heard of the word “cleft” before, let alone know the implications of having one. For others, there are multiple family members who have clefts. Don’t assume either way…and there is little to no medical genetical evidence or research on this particular point.

3. Clefts are the most common birth defect

Clefts are considered in most countries around the world the most common birth defect, affecting 1 in 600 – 700 children and only around 15% of those are linked to a syndrome or disease. Mind-blowing stuff considering that most medical professionals and people I have encountered are so ignorant about clefts. Interesting also that down-syndrome affects between 1000 – 1100 children in most countries, which is less common than clefts and most people know way more about it.

4. Clefts cause a multitude of challenges – not just in your area

A whole host of medical challenges can come from clefts and it is not always an easy fix. Be aware of those other issues and consider how they may affect your area and your patient. I know this can sometimes be difficult for professionals who often consider their specialities to be at the apex of the medical triangle but professionals that we have encountered that have a more holistic view of our child are the ones we prefer to continue seeing.

5. The journey is long for us

Some of our kids will need surgeries and treatments till they are fully grown, which is at 18 or 21 years old, gender dependant or even longer. The journey is long and exhausting. Keep that in mind when giving advice or treatment.

6. This is all a lot for the child to deal with

Although we are coming to you for help in your area of specialisation, it is not the only challenge we deal with. In a given week (and this has actually been the case for us) my child may come to you for a dentist appointment but I may also have to go to speech therapy, occupational therapy, an ENT, a craniofacial surgeon and still keep going with the normal stuff; like school, extracurricular activities and trying to find time to be a normal kid. For many of us we even go to cleft teams annually where we see up to 11 medical professionals in 1 day. This is a lot for a child. So please understand that when my child comes to see you and doesn’t want his hearing checked, it is insensitive to tell him to stop crying or to “be a good boy”. When you understand this is hard work for the child, your approach will be kinder, you will understand the child better and you will probably have more success examining the child too.

7. Help us understand

Most of us, as parents, are not doctors or medical people. Please explain what’s going on. We want to know. We want the details. But in language that we can understand. Draw a picture, show me a diagram, whatever it takes. It is my child’s medical care. It affects every facet of our lives, please explain. And not condescendingly. It helps us a lot and what may seem obvious to you is not to us.

8. Ask us if we have any questions

So simple, but so uncommon. I know your day is busy and you are rushing from one appointment to the next, but you are dealing with my most precious gem, the most important thing in my world, the least you can do is let me ask any questions I have and be given the time to have them answered. Oh! And of course, I am paying you too.

9. Use the right language

This is the point that I am most passionate about. Maybe, it makes be sound like a lame politically correct and overly sensitive person but so be it. People who cared about semantics used to drive me mad and used to make me say things like “who cares what you call it” or “a rose by any other name would still be as sweet” or my personal favourite: a “monkey in silk is a monkey no less”.

But come on it’s the 21st century, we need to consider others, we need to use the right language because when you don’t YOU are isolating ME and MY CHILD. You are unknowingly offending me. You make yourself sound uneducated. And I will not want to come back to you.

What to say or not say:

You can’t ever ever ever call it a HARE LIP! It’s called a cleft lip or cleft palate. Comparing my son to a hare is not appropriate, it’s an antiquated term and highly offensive.
My child is not a “remedial child” only by virtue of his cleft.
He is not a “cleft child” but rather a “cleft affected child” or “a child who has a cleft”.
It is not generically called a “a cleft palate”. One may have a cleft lip and/or a cleft palate (soft palate and/or hard palate) and/or a facial cleft and/or an alveolar (gum) cleft. The cleft may only be complete or incomplete. It may also be unilateral or bilateral. This is not an exhaustive list by the way, but gives you a little bit of an idea.
“Don’t worry”, just think about that one and you’ll immediately see why that is a silly thing to say to a parent of a child with medical challenge, my child is my prized possession, I will worry. It’s natural to worry.
“Technology is amazing nowadays” – there has been little advancement in cleft care for decades, so you sound ignorant when you say this.
“It’s all done now” – no it's not.

Generally, the rule is don’t underplay our hardship. Trivializing our challenges makes you sound insensitive when you’re probably trying to make us feel better. Rather say things like “you’re all doing great” or “you’re so lucky to have each other” or just sympathize “wow, that must be tough” alternatively saying nothing and just listen and then give your medical advice in relation to your area in a compassionate way.

10. My entire family (include my future children) was diagnosed – not just my son

Many of the above points apply to all medical families and not just those with cleft children. We didn’t ask for these medical problems. The doctor diagnosed my son but really, we all have to bare the load. It’s hard for our entire family, in different ways for each of us. Our lives were and continue to be turned upside down repeatedly in the following ways:

Money: we spend every cent on our medical expenses and pay fortunes over and above our already expensive insurance premiums.
Jobs: my child is repeatedly in hospital; goes to doctors weekly; has been under anaesthetic eight times and needs several therapies a week. Oh, and childcare too. This stuff doesn’t just pay for itself. So, somehow, I need to maintain a job, and also try succeed in it. Oh and we need to have jobs that are understanding about your child's situation. And the sad reality is that due to all of these additional responsibilities, I’m at a disadvantage and can’t compete against others (never mind the challenge of competing against my male counterparts or colleagues without children).
Siblings: this is a sensitive one for me. My daughter is 3 months old and is already “the other child”, the sibling of the extra needs child. She is healthy and, comparatively, easy but the focus is so often on the child with the extra needs. Yet the sibling still needs attention, care and nurturing and not just in response to a need or when she is in distress but when she is calm and relaxed and needs TLC. So often, as a parent, I my boy demands so much attention that there is so little left for his sibling - a sore spot of course. A work in progress and an angel to consider.
Marriage: my relationship with my husband, which is the foundation of this family and the roots of this child’s life also needs to be nurtured. And so many relationships do not survive medical trauma. It adds the most complicated dynamic to the mix. You both want what is best for the child but what happens when opinions differ on course of treatment? And what about what’s best for your partner? It’s so hard to nurture a relationship when all the focus is on nurturing a little one - specially one with extra needs.

On top of all of that, we are also trying to manage a house, take and fetch from school, drive to therapies and maintain friendships. Medical families have stress levels that are through the roof in a way that only medical families can truly understand. The panic and anxiety are all consuming.

So, the message to medical professionals; have some compassion for our situation. It’s not a lot to ask.