Special Needs Parenting: Breastfeeding with Oral Dysphagia

Rebecca Shayler-Adams by Rebecca Shayler-Adams Additional Needs

Rebecca Shayler-Adams

Rebecca Shayler-Adams

We are just a typical family muddling along our day to day lives. 4 kids, 1 with autism, 1 with an unknown neuromuscular condition

With all my children, I have been determined to breastfeed however I have varied in the time I have managed to do this ranging from 6 weeks to a year (so far).

My latest experience has been with my youngest who I am still feeding as she approaches one year old.

I had decided before I had given birth and knew about her problems that I would try and breastfeed until I was back at work, just due to the financial side of things.

The cost of formula is so much, when I could get milk for free. We did still get the steriliser, bottles and a tub of formula just in case I couldn’t feed her myself.

Although I personally think breastfeeding is super beneficial, I believe fed is best.

I have always generally breastfed for the financial reason and the ease of having perfect temperature milk on tap, literally.

It has been easier to a degree, I have had the odd look of ‘is she breastfeeding?’ but generally I have only ever had positive experiences.

Then my baby girl was born, and this sudden ease of breastfeeding changed.

It started as soon as she was born, she struggled to latch on but after a few days she eventually learnt to.

In fact, for the first 48-72 hours she didn’t eat anything and would have to be fed through a syringe.

Even now she finds latching on hard, she has never fully been able to do it correctly. The small spurts of feeding when I had to wake her up was just down to her being a lazy baby.

I was concerned but as everyone was saying she was fine I just went about life and carried on trying to feed as best as I could.

In fact, I even tried to bottle feed knowing some babies just can’t breastfeed sometimes.

We were sent to a doctor where they were trying to find the cause of her hypotonia, they were asking about all her symptoms and I mentioned the fact she didn’t feed like the other children did, she didn’t latch on right and that she coughed a lot and would choke.

They suddenly started to take my concerns seriously and she wasn’t a lazy baby.

They ruled out that my milk flow was strong and all of a sudden we were dealing with something called Oral Dysphagia and potentially an unsafe swallow.

I asked if I should go onto bottles because I have heard they are easier for the baby to feed from, but also because I had heard through the grape vine that you couldn’t breastfeed if you child had a feeding problem.

I was told to keep breastfeeding if I wanted to as she was growing with breastfeeding whereas if I changed to bottle feeding she may stop feeding and therefore stop growing.

Now my baby is nearly a year old, I get the odd look when I breastfeed in public.

I still try to be discreet about it more because I don’t want the whole world to see my breasts, but I am happy to feed anywhere and everywhere.

I have also noticed since my oldest daughter, who is now 8, there are so many more nursing areas.

My local shopping centre has a nursing room with big comfortable nursing chairs. They have bottle warmers in but are also a quiet, clean place to feed.

You see a lot more ‘Breastfeeding Friendly’ stickers at attractions, so days out I feel even more at ease to feed my daughter.

Due to her not being able to latch on properly, sometimes feeding her does hurt or feel more uncomfortable then I felt with my other children.

It is also horrible to see her choke and see her throat muscles give up on her when she feeds sometimes.

I am, however, grateful she can feed, I am grateful that it gives me time to be with her like any ‘normal’ baby and mother.

It gives me 10 minutes just me and her in this unique bubble of everything will be ok.

I have been asked when will I stop breastfeeding and my answer is when my baby doesn’t need to.

I never imagined I would be feeding a baby with teeth, let alone a baby who has feeding difficulties.

I have also been asked why I breastfeed if I have so much trouble, and the answer is because if I can give her the best possible start and the most organic natural way of feeding then I will try.

There are so many differing views on the best way to feed babies but to me as long as my baby is happy and fed then bottle or breast is best.


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