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The Most Important Thing

It’s hard to believe this photo of Rachelle and baby Rocco almost never happened.

For most of us, soon after the birth of a baby, we discover that photos can be misleading. Parenthood is, we discover, not a nappy commercial. We discover the day-to-day reality is more messy,blurry and relentless than anyone ever described. We join a secret club with other parents and go around shaking our heads,making cynical comments to each other about ‘those’ photos of clean babies, gazing lovingly at mothers who look like they have just awoken from 8 hours of sleep and been dressed by a team of Vogue magazine stylists.

When there is a perfect moment – a special cuddle, a loving look, a smile, a sleeping baby – we whip out the camera phone to gather precious, precious evidence that there were, after all, at least some glimpses of connection, buried in the chaos and confusion of parenthood.

But, for Rachelle, her family’s hope of stealing a moment of perfection here and there, came crashing down at her 20 week scan.

Here is her story.

At all the previous scans, they had given us the results on the day. When we went along to our 20 week scan they didn’t say anything. They just gave us the scans and told us to go and see our obstetrician. Of course, it was impossible not to look: we read the report before we could get an appointment to see the doctor – and that’s when we saw all the medical terms. We Googled everything. By the time we got to see the obstetrician it was simply a matter of confirming what we now knew: our baby has Spina Bifida.

I’d heard of Spina Bifida but I didn’t know the ins and outs of it. I’ve not ever known anyone with it. So, it was a huge shock. Fear of the unknown takes over and you imagine all of the worst possibilities. My husband and I were…we bawled our eyes out together for a long time.

We were presented with the choice to terminate the pregnancy, or have him.

The medical staff highly recommended the termination. They said he would be unable to communicate, physically he wouldn’t be able to move around, he wouldn’t be able to function. They said that when he was born he probably wouldn’t be able to breathe on his own.

So home we went – armed with a stack of brochures and two options to dwell on. Two options. Neither of which could ever be reversed.

But even at that stage, at 20 weeks, I could already feel him moving in side of me. In my side of the family we’d gone through cancers: my little son, my 8 year old had cancer, so I have gone through that whole hospital process. I guess I was kind of prepared and I was okay, and I was accepting of whatever was meant to be. I already knew I wanted to have him, even though we were prepared that he would probably die.

My husband was more gradual. He didn’t have the same feelings as me. But in the end he came to accept we’re not going to get the ‘perfect child’, but he wanted this one.

So we came to the decision that we would continue and just go through each of the scans each week and just see.

We lost friends because we decided to continue: they didn’t support our decision. They told us we were silly and wrong. They still choose not to talk to us. And we had a lot of friends who kept saying we should have the termination too, that we should just try again. But we found out later (after he was born) that if we had tried again we would have had a worse situation, something we didn’t know at the time.

So I began using Google. I found other families in our situation, overseas and some in Australia. One of those families have been a huge support: they showed me photos of their children. And that kept me going and kept me positive.

Each time we went to have the scan they would bring up the termination too. But each scan got better and better. The doctors were quite surprised that that they couldn’t see some of the other serious issues they expected to see.

Then Rocco was born.

That first cry, it was amazing. That was a miracle. He was breathing.

Then we took stock. At birth, he had a sack on his back with the nerves exposed. So he had to have surgery to close that up, and was admitted to Neonatal Intensive Care. And then, a few days before he was due to be discharged, complications set in. More surgeries followed.

Because we are not sure about how much strength he will have in his legs or his body, an Occupational Therapist sees him every six weeks. And she does a little bit of work with him, and tests him out on what he can and can’t do at any time and checks his milestones.

The therapy and medical care has been amazing. Really amazing. But one thing we missed out on was bonding. Being in intensive care, and surrounded by medical procedures and tests and machine, you miss the human side of things. Just being a parent. Not being able to have that first moment of skin-to-skin, or holding him when he cries: it strips you away.

I developed Postnatal Depression. Hopefully a lot more people will start to be more open to talking about this issue. It’s a very important subject and it angers me when people say “you’re not depressed, just suck it up” or “don’t worry about it, get up move on”. You know….if only life was that easy: but it’s not.

So I looked into things, and spoke to Rocco’s Occupational Therapist, and she suggested I try The First Touch Program because it has a lot of baby massage. He needed more than just six-weekly appointments and I was desperate for some one-on-one time with him. Because I was not doing well, and because of Rocco’s condition, we decided we wanted a good quality program with someone who had government-accredited training. That’s when we found Caroline, from Baby in Mind.

To be honest she was amazing. We booked in for a five session course. There were four families in the group: we missed one session because I couldn’t make it, so Caroline actually came to our house so we didn’t miss anything.

I didn’t really go in to the First Touch Program thinking about my postnatal depression, it was more about Rocco, about learning some massage so I could help him develop, and to be able to enjoy that. Over the five weeks he became a lot more relaxed and not so sensitive. He had been a frighty kind of baby, and would jump at everything which is common for babies who have been in intensive care or who have had lots of painful procedures. But by doing the touch techniques Caroline showed us, Rocco began to relax, and lose his edginess.

But I was surprised at how much of an effect the First Touch Program had on me as well. The bonding was incredible. Caroline didn’t just show massage strokes. She was able to show us how to feel much closer to our babies through lots of different ways to use touch, and how to read the little signals and communication that you can miss when you are depressed.

Being close to Rocco like that, and learning so much about what he was saying and ways to make him feel better was our turning point. He would start to really make eye contact with me. And I could see what he enjoyed and he didn’t enjoy.

It’s funny because they said he would never be able to communicate. But for certain things we did in the class he’d have this BIG smile on his face and it was so beautiful and I never expected that. Other times he’d be like “Nup! I’m not having a bar of it!”. A leave-me-alone-I’m-trying-to-sleep kind of body language. So, I could start to read him a little bit more and from there we were able to get to know each other as mother and baby. Everything just fell into place.

It was so good, that I encouraged my husband to come along also to one of the sessions at the end. And at first he was a little bit kind of hesitant: as you would be, especially with a whole lot of women (although it was a small group), but he really got involved. Rocco of course feel asleep! So my husband couldn’t actually massage him, so he sat with the massage doll and he went through all the routines with Caroline.

And here is the thing I want to say about The First Touch Program. Every parent needs support and help. If you have a baby with a disability or postnatal depression….or (as in my case) both…there is help out there and one of the most fantastic support systems out there is Baby in Mind who run this program.

Therapy is important but it is not the be-all-and-end-all of dealing life with extra challenges. Some days it is easy to get caught up in thinking that if I do all the therapy right, or get all his medication sorted out..then it will ‘solve’ what is happening, and then we can get on with life. In the meantime, there is a little person growing up in front of me. The bond between a baby and his parents is just the most precious and most wonderful thing, and I think I took this for granted before going through this with Rocco.

I discovered that in two seconds, anything can happen to your child, or to yourself, and having those little moments where we are just with each other…that’s what I appreciate now. The First Touch Program helped me to stop rushing around and worrying about everything, and just to concentrate on him and me, and being able to appreciate that moment.

That’s the most important thing.

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