“A surprise diagnosis threw our whole breastfeeding journey into question”

I breastfed my first child, Clara for 14 months and so when I got pregnant with my son I had no doubts I’d do it again. I hoped that second time around breastfeeding would be even better and smoother than the first time. What I wasn’t prepared for was a surprise diagnosis after birth that threw our whole breastfeeding journey into question.

A surprise diagnosis after birth

The day my son Caleb was born is a bit of a blur, for many reasons. He was two weeks early, and we just about made it to the hospital in time for delivery. Shortly after birth, we got a surprise Down Syndrome diagnosis.

In the whirlwind of everything that day, I remember uttering the words ‘Down Syndrome’ to my husband and feeling so disappointed.

To my delight Caleb was a textbook baby that commando crawled to latch from the second he was placed on me. “Second time round” I thought “This will be a breeze!”. There was no doubt about it Caleb was born hungry!

There was no doubt about it Caleb was born hungry!

I was so pleased as I’d had a tough start to breastfeeding his older sister Clara due to a tongue tie, infections, and a milk allergy. Whilst I ended up breastfeeding her for 14 months I was therefore under no illusions that breastfeeding was easy!

I felt our breastfeeding journey was over before it had even begun

Caleb was born in a Midwife Led Unit so when the possibility of him having Down’s Syndrome came to light, he needed a blood test to confirm. This meant just a few hours after he was born, I was bundled into the back of an ambulance beside him. He looked so tiny in his incubator covered in wires. Along with all my fears regarding his health, his future, and what the impact of a Down Syndrome diagnosis would have on our family was also the realisation that this could mean the end of our breastfeeding journey.

Over time it became apparent breastfeeding was tiring for Caleb and we were told children with Down’s Syndrome find breastfeeding difficult. No one told me I couldn’t breastfeed him, but no one actively told me I could. I was exhausted, processing a lot of emotions and recovering from a very quick labour so he was bottle-fed some formula in the mean-time.

My “Angel Midwife” gave me the hope I needed

I will never forget my “Angel Midwife.” She explained to me that breastfeeding can take a lot of different forms and it doesn’t always mean feeding from the breast. She supported me to express milk as bottles were much easier for Caleb to manage as well as encouraging me to continue to offer short feeds direct from me and lots of skin to skin.

She explained to me that breastfeeding can take a lot of different forms and it doesn’t always mean feeding from the breast.

We left NICU not only feeling more positive about his future but more confident in our ability to continue our breastfeeding journey.

His weight crept up slowly but surely

Caleb’s weight gain was slow, and his jaundice made him sleepy, so he needed to be woken every two hours to feed. I was in an exhausting cycle of short feeds at the breast, a bottle feed, and pumping for next feed…all on top of looking after a lively toddler!

Each time the scales were produced my anxiety levels were through the roof because his weight gain solely depended on me. As the weeks went on his weight crept up and his short feeds at the breast became longer and more efficient. By about 8 weeks he was feeding direct from me, and we haven’t looked back since. 

By about 8 weeks he was feeding direct from me, and we haven’t looked back since. 

I decided to donate my milk to give back in some way

While our stay in the NICU was short, we saw many other babies there benefitting from donor milk. This inspired me to try to donate to give some of our liquid gold to others. I feel so pleased that we managed to donate 4 litres.

While our stay in the NICU was short, we saw many other babies there benefitting from donor milk. This inspired me to try to donate to give some of our liquid gold to others.

I naively assumed Caleb’s Down Syndrome diagnosis meant he would be unable to breastfeed, but I am proud to say he is 6 now months old and shows no signs of stopping!

A poem I wrote to sum up my breastfeeding journey

BREASTFEEDING

It’s one of the most natural things to do,
But no one tells you the toil it can take on you.
 
In the early days it’s so painful and sore,
And you just don’t want to feed anymore.
The cluster feeds to help build your supply,
Means you have to kiss your night’s sleep a goodbye.
 
When you feel like a 24/7 milking machine,
And every latch on just makes you want to scream.
 
It’s a learning process for baby and you,
While you both figure out what you’re supposed to do.
 
But It’s an act of which you’ll grow so very fond,
Because it sparks such a wonderful mother and baby bond.
 
Those little moments of quiet amidst the busy day,
Are a chance to connect with your baby in a very special way.
 
As they gets older and feeding is less and less,
The fact that we’ve made it this far makes me feel very blessed.
 
When my nursing journey comes to an end, I know I’ll shed a few tears.
But I’ll be so proud to know that I gave them the best start to their early years.

I found the following group so helpful and supportive in my journey: Positive About Down’s Syndrome Breastfeeding Support Group