Breastfeeding a seriously ill baby

Breastfeeding a seriously ill baby

When I was pregnant with my second baby, we found out through routine scans that she had some serious heart defects.  She would be very sick when she was born. Needless to say, this was a terrifying time for my family.

As well as dealing with the emotional fall out from this, we also had to think on a very practical level about the logistics of the situation.  It would mean having our baby at a hospital with specialised facilities, 90 minutes from our home.  We would need to relocate our family for the duration of our baby’s hospital stay.  No one could say for sure how long that would be.  It could be 3 weeks or 3 months.

I have always put nutrition front and centre in my life, so one of my main concerns was:

“How would I be able to breastfeed?”

With breastfeeding, education and preparation are key. I ordered a top-of-the-line, double electric pump straight away, so I would be able to pump wherever I was.

Fast-forward 20 weeks, and my little girl came into the world kicking and screaming.  She was immediately rushed off to NICU, leaving me behind to learn the joys of expressing colostrum. The midwives supplied me with a syringe, and showed me how to express the few drops of colostrum into it.

It truly was a painstaking process – 20 minutes of manual expression yielded a few millilitres of colostrum. I set the alarm on my iPhone for every three hours.

Round the clock I collected a few more millilitres.

After a few days of hand expressing, my milk came in.  I was finally able to break out the Rolls Royce of breast pumps and start expressing large quantities of milk.

During this time, my baby was being fed total parenteral nutrition formula (TPN), directly into her vein. As she was having surgery, she was nil by mouth.

When she had recovered from her first surgery, she was able to have some colostrum via her nasal gastric tube. I watched in horror as the nurses gave her the entire quantity of colostrum at one time (about 150mls), and she proceeded to vomit it all up.

I was devastated.

Round the clock expressing for three days, and the liquid gold was wasted.

Luckily my milk came in with vengeance, and the supply was there for future feeds.  But she still missed out on the colostrum, which is full of antibodies and specially designed for newborns.

For the next two weeks, I continued to express and store my milk in the fridge for nasal gastric tube feeds. More surgery continued in this time, and with it came lots of worrying and waiting.

At one point, she was diagnosed with a chylothorax, which would mean a low-fat diet for six weeks unless her lymphatic system could recover. A low-fat diet for an infant involves taking a special formula, and breastfeeding is not allowed. I asked the doctors to let us challenge her with breastmilk after a few days on the low-fat formula, and she was fine.

This was such a relief, as it would have been so hard to keep expressing for another six weeks.

On day 16 I was elated to be told I could finally try to breastfeed.

With my first child, it took a few weeks to get her latching properly.  With this little one, she popped on like she had done it all before.

She never looked back. 

When you read about breastfeeding, you feel that unless you can do the kangaroo care (skin to skin contact) and get the baby breastfeeding within a few hours of birth, then you are doomed.

It was such a relief that this proved not to be true in our case.  This should give hope to other people in similar situations.

We had a wonderful breastfeeding relationship for the next 15 months, and it really helped us to bond given our rocky start. Not only that, we realised she had a dairy allergy at six months.  If I hadn’t been able to breastfeed, there wouldn’t have been many easy feeding choices available to us.

Feeding my family healthy food is one of my main priorities in life, and breastfeeding is the first crucial step in this.  Not only is it the perfect nutrition for babies, but every feed tastes different depending on what the mother has eaten. One feed might taste of roast chicken, broccoli and carrots. The next feed could be beef stir fry with rice. When a child starts on solids, they have already been exposed to a wide range of flavours and will be more accepting of them, reducing the chance of a fussy eater.

If you are just about to start on your breastfeeding journey, good luck.  It can be a difficult process, but you will reap the benefits for years to come.


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