The unexpected benefits of breastfeeding a baby with additional needs

When I was pregnant with Oscar, my first-born child, I wasn’t sure whether I wanted to breastfeed. I knew some of the benefits of breastfeeding but was concerned about the lack of personal freedom it would generate; I didn’t want to be his number one carer, stuck to my baby 24 hours a day. I wanted equal parenting and for my partner to have the same share of responsibilities.

I decided to give it a go after taking the NCT breastfeeding workshop with Cordelia. I thought: “Why not? It looks like an interesting thing to try, but I won’t put too much pressure on myself and if it doesn’t work, so be it, we will switch to bottles and I will have my life and boobs back”. That was my plan.

Little did I know! As I’ve learned during my first year of parenthood, having a child is incompatible with making plans! Littles ones come with their own agenda!

The first weeks of our breastfeeding journey were super challenging due to an undiagnosed tongue-tie and other obstacles that I'll tackle later. But both Oscar and I have fighting and determined mindsets! After 8 long weeks of triple feeding, relentless pumping/sterilising and despairing over latching techniques, we managed thanks to the support of a private lactation consultant to force open some NHS doors and have his tongue-tie snipped. From that day, breastfeeding, which had been painful and daunting, became a source of joy for all members of the family!

I became a breastfeeding geek and learned as much as I could. My proudest moment was breastfeeding in the carrier; I felt like “a badass mum”. I started to support mums around me. I was on cloud nine strolling through London with just my son, my boobs and some nappies! It was a truly magical period during which I could feel a forever bond forming between me and Oscar.

It took another big event for me to discover the unexpected perks of breastfeeding in a very challenging context.

When Oscar was 3 months old, my “mum guts” told me that something was not quite right. After being dismissed by the GP and called a “worried first-time mom”, I insisted on being heard and sent to A&E where paediatricians took my concerns seriously. Without going into too much detail, it took 8 weeks of medical exams and tests to obtain Oscar’s diagnosis. He has a very rare genetic neurological condition which impacts the shape of his brain and more particularly the region in charge of balance and coordination. Some children with this syndrome have swallowing and breathing difficulties, eye issues, kidney and liver malfunctions, and mild to severe intellectual disabilities. However, the only thing the doctors know for sure is what they can see and so far, Oscar is a healthy little boy with delays in motor skills due to hypotonia (low muscle tone). We will have to “wait and see”, support him through lots of therapies, monitor his organs and vital functions (kidney, heart, liver, breathing, swallowing, and brain activities in particular) regularly and in 5 years or so, we should have a better idea of what his life will look like and the extent of his challenges.

This is when I discovered some additional bonuses of breastfeeding that I would like to share with you.

Physical development  

Breastmilk is the optimal source of nutrition for babies, but our journey has taught us another physical benefit. Oscar’s condition impacts movement: physical skills that are innate for the majority must be learned by him. Nursing requires lots of coordination for the baby (mouth opening, tongue movement and swallowing). Oscar managed to learn and develop the technique required for breastfeeding, which may or may not have been innate for him. It’s one of the first neurological pathways he had to build and maintain. Hopefully, in the future, he will be able to build other neurological pathways so he can learn how to talk, walk, and all the wonderful things our brains allow us to do!

Emotional and comfort

Nursing to sleep before a brain MRI, nursing during a heart ultrasound (with the hand of the radiologist only 5 cm away from my nipple) and during an EEG, nursing to relax him before scans, nursing while waiting in corridors, nursing when waking up from sedation, nursing during physical therapy when pushed a bit too far, nursing while receiving his diagnosis,  nursing to feel at home when you spend far too much time in hospitals. Breastfeeding is a powerful tool for coping with adversity, it reassures babies that “everything will be alright; we know it sounds scary, but we are here for you”.

Unexpected benefit for mum’s mental health and handling difficult situations

As a mum, learning that your kid has a condition that will impact his entire life is soul-destroying. Your dreams are shattered. In this storm, you cannot crawl under the duvet with chocolate, ice-cream, and wine. You have to power through all the medical exams and run from one hospital to another, setting up meetings, making a list of all the questions because you only have a few minutes to ask them, doing your research (on top of taking care of a 3-month-old and your own postpartum wellbeing). I found that breastfeeding was a precious resource that helped me get myself together and just relax.

It helps me leave worries and anxieties behind and return to the ‘here and now’ as I have something more important to do, I have to nourish my son. I have to enjoy the warmth of his body on mine. I have to look at him suckling; I have to look at the tranquillity on his lovely face. That is the most important thing I can do in the moment.

I am sure Oscar can feel it as well and for the duration of a feed, we can, he and I, once again find the airiness and lightness of being just a baby and a mum. Normality. I am sure the oxytocin released during the let-down helps!

I don’t know what else I can do, I don’t know how to support my child, I don’t know what his challenges and needs are, nor what they will be… The only thing I am sure about, my only certainty is that breastfeeding is the best thing I can do for him right now.

My top tips for breastfeeding mums:

• Get help; it takes a village

• Let go, live in the moment, be kind with yourself

• Trust your gut, it can be more perceptive than overworked medical staff