Additional Needs

A Labour of Love

Posted by Nicola Sheldon on 1st August 2019 Additional Needs, Advice & Support, Disabilities

Share this article

In the summer of 2015 I was pregnant with my second child.

We'd kept the gender a surprise which made it surprisingly difficult to choose a name, and without a clearer sense of who this small person growing inside me was it was harder to plan clothes and blankets etc. But that was okay, second time around I knew I didn't need much more than a car seat, and some nappies and babygrows.

Like my eldest, this baby would co-sleep and breastfeed.

Breastfeeding hadn’t come easily with my first, in fact it had been rather difficult.

But I tackled it like I do most problems, I did my research, bought every piece of equipment I thought could possibly help and then turned all of my determination and stubbornness towards solving the problem. Which we did, and we (mostly) enjoyed nursing until he was 3 and a half years old.

I was still nursing him while pregnant with baby number two and I imagined that soon I would have two little blond heads nursing together.

After my previous experience I was confident and determined to be successful second time around. By this point I was an active member of my local La Leche League and had a brilliant support network should I encounter any problems.

So it all came as a rather enormous surprise when things didn't quite go to plan.

Thomas arrived early one Thursday morning in October, but during delivery he had been deprived of oxygen and was born in very poor condition.

The first few days were very touch and go while we waited to hear if he would pull through. As most NICU mums do, I turned to the breast pump to stimulate my milk production while I waited.

Thomas was 6 days old when the speech and language therapist came to see us. I was so excited to see her and discuss how to begin breastfeeding directly.

Never in a million years did I anticipate what came next.

Thomas was born with no suck, no swallow, no gag and no rooting reflex. All the natural reflexes he needed to feed were completely absent.

She told me he would likely be tube fed for the rest of his life.

For me, this was the moment, the moment when I realised my life had already changed without me noticing.

There were a lot of tears cried that night, and in the days that followed as I grieved for the idea of a child that I had lost, for my life as I had known it, and for all the things I had dreamt of or hoped for for this baby.

Through it all I kept on pumping breastmilk. There was little else I could do for him at this point.

I soon resolved that I would continue to pump. It seemed like the most sensible thing to do.

I knew that breast milk promoted optimal brain development and contained stem cells, both of which seemed important for my brain injured boy.

It also promoted optimal eye development which could only be a good thing for his visual impairment.

I decided that I would express for him until his second birthday as The World Health Organisation recommends breastfeeding to age 2 and beyond.

Without a swallow Thomas was very vulnerable to aspiration pneumonia, especially as he had a particularly terrible case of reflux.

However, I also learned that breastmilk had protective factors here too. The good bacteria in breastmilk was less likely to cause a chest infection if aspirated, and could actually help neutralise any bad bacteria.

And of course there's all those antibodies which are so helpful in the winter months especially.

It wasn't long before the gruelling regime of expressing and feeding started to take its toll, while his reflux had him classified as failure to thrive.

His dietician struggled with not being able to accurately account for what was going in and she really wanted some thing with much higher calories.

We would have almost weekly conversations about introducing formula.

Family and friends would ask when I was going to stop, they saw it was a struggle and "surely he's had all the good stuff by now?"

I was spurred on by the support of my husband and closest friends, online friends and my local La Leche League group.

In those early months, as I learned to care for my disabled baby, the only place I would venture out to was La Leche League, where the Leaders would cuddle my baby and feed me tea while I pumped.

As I grew stronger and more confident my resolve strengthened.

Although at the same time I felt stuck in a catch 22. As the months passed Thomas seemed unable to tolerate anything other than breast milk, and he didn't tolerate that well as it was. 6 months came and went but unlike other babies Thomas was still on an exclusive milk diet.

We soldiered on past 12 months, stuck in the repeating cycling of expressing and feeding.

Finally relief came at 14 months when Thomas had his peg placed. Finally we could start to wean!

We started to introduce a blended diet, and before long I was able to start reducing his milk feeds and everything started to feel a bit more manageable.

I was still expressing twice a day for 30 minutes each but it was a lot easier.

On the morning of his second birthday I was resolute. I had done what I had set out to achieve. 2 years of breastmilk.

I got my pump out for one last time and stored the last of my milk at the back of the freezer as a keepsake.

I had a small frozen supply that would last us a couple more months so it didn't feel sad, I was just delighted to pack the breast pump away!

I still carry some grief around not being able to feed Thomas directly. It certainly made meeting his emotional needs significantly harder.

But it is hands down the parenting move I am most proud of. It was a labour of love for my special little boy.

So for World Breastfeeding Week 2019 I want to do a shout out for every mum who gave their baby breastmilk.

Whether it was a few drops or several litres, whether it was directly from the breast or via a supplemental nursing system, whether expressed and given by bottle fed, or tube. I see your pride at the goals you achieved and I see your grief if it didn't go the way you wanted.

I see your labour of love ❤