How to talk to the mum of a special needs baby

NSW mum Holly Karten’s incredible daughter Kokoro was born with CHARGE syndrome, a complex genetic syndrome that caused her to be deaf and blind. Here she tells her own moving story and explains how you can talk to a mum who has just given birth to a special needs baby.

When my daughter, Koko, was born I was thrown into the overwhelming phase of being a new parent. For anyone, this time is coupled with this crushing sensation of suddenly realising you have no idea what you are doing, and also being illuminated with the intensity of your love for this new little being. The weight of the responsibility of looking after this precious and defenceless being is flat-out terrifying.

In our case, we were also left grappling with the reality that our daughter would be differently-abled and medically complex. Far from fending off flowers and eager visitors wielding “It’s a girl!” balloons, we were faced with an seemingly endless parade of doctors beginning sentences with “I’m sorry but…”

During this time, my husband and I thankfully had the love and support of some awesome people who helped us survive the waves of emotion, lack of sleep and difficult circumstances that these early days of our daughter’s life brought with them. These are the people in my life who when I think back to how they were around and supported us, two years later I still get teary with gratitude.

So, if you are worried about what to say or how to be there, here’s the definitive list of the most awesome help I received in the first couple of months of Koko’s life:

1. Don’t forget to say "Congratulations".
Chances are, the parents are going to be having lots of difficult conversations as they are dealing with doctors and specialist. Your job as a person who loves them is to supply as much of the newborn experience they are missing out on as possible. Check directly with the hospital if you can send flowers (if the child is in a NICU this is unlikely), send cards and balloons, say “Congratulations!” When the large majority of people don’t do this because they are afraid of saying the wrong thing, this creates the sense that the child isn’t celebrated and causes shame in the parents, heightening the isolation of hospital life. First and foremost, a little family has just introduced a new life, and that is such an incredibly beautiful thing, it needs to be celebrated.

2. Check your emotions at the door.
The most important thing to remember during these situations is that you might have your own emotional reaction to what is going on, but you don’t get to share that with the people at the centre of it. If you need to debrief, you need to find someone not affected by the situation to do that with. When you are with the parents, you need to be useful in an emotionally stable and tangible way. Taking on the task of “holding space” for the other’s emotion (because there will be all the emotions) without judgement is not something everyone can do. If you can’t do this, think of someone in the parent’s immediate circle who can, and facilitate them doing this task.

3. Don’t probe for medical updates.
Some parents will want to keep you updated with each incremental medical update, others will want to process it before sharing. Offer to be communications manager to pass on details to those interested parties that the parents can’t deal with if this is an area of strength for you, but don’t probe for specifics. Try saying something like, “I would love to hear how baby is doing and about what you are finding out if you’d like to share, but I also know you might not be ready yet and that’s ok.”

4. Foodand washing.
This should probably be number 1! Chances are the parents in this situation are running on empty. Food bought from hospital vending machines and takeaway shops doesn’t help. If you want to help out, create or buy, nutritious, warm and delicious food that will be enticing enough to pry an anxious mother from her child’s bed for 10 minutes to nourish her own body. Let them know in advance that you are bringing it, but don’t ask if you can. Simply say: “I am making you a home made chicken soup. I will have it hot and deliver it to your ward tomorrow at 1pm. If you aren’t up for a visitor I will leave it with the nurse station. I will text you before I arrive to check. It’s ok if you aren’t available.” If you are not a cook but still want to lend a hand, why not offer to pick up a bag of washing and return it clean, dry and folded.

5. Remindthem you are their village.
The absolute best thing a friend said to me in the first few weeks of Koko’s life, after we had discovered she was deaf and blind, was, “Ok, well, we will just find out what we need to learn and learn it. Sign language or braille or whatever, we can do this.” The simple reminder that it wasn’t only up to my husband and I to raise our daughter, but that she had a community and a network of people who loved her exactly as she is, was really the most perfectly reassuring thing anyone could say. It cut through the overwhelm and fear and reminded me that together anything is possible.

6. Don’t send them the “Welcome to Holland” Poem.
Trust me. They’ve already seen it. That poem will have far more meaning to them when they aren’t in the throes of the early diagnosis, right now they are swinging between heaven and hell... they are nowhere near Holland.

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7. Most importantly, don’t disappear when the initial crisis is over.

We are all busy and have our own lives to lead, but if you plan it in now, you won’t forget to be there once things have settled a little and provide the support when it’s most needed: when the crowds have gone home. It might be something simple like scheduling into your calendar a reminder to make an extra large batch of something you are cooking once a month and freezing it for the next time you see your friend to stock their freezer. It might be organising to take your mate out for a surf once a fortnight so that you are having regular contact and can be kept in the loop of what is going on in their life.

It might be asking your friend for a time that suits them to have a weekly chat on the phone where you are available to listen to anything they need to vent. It might just be not holding a grudge if your friend is so busy that they aren’t available for a while, and still inviting them to things knowing they will probably say no, and making sure they know that’s ok. Whatever it is, your friends just need to be reminded that they aren’t in this alone.

- By Holly Karten

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