After my brief but intense hospital stay, Jakob was born at 32 weeks per emergency caesarean, weighing only 1500 grams. He was so small and unwell that I wasn’t allowed to hold him until he was 2 weeks old.
I was desperate to at least give him the best I could at least in terms of nutrition even though my body had refused to carry him to full term. I started pumping every 2 hours day and night, from the day after the surgery as the baby wasn’t strong enough to drink.
Eventually the milk did come in, first a few drops then increasing amounts, more than the baby could finish at that time. Pumping would become my life purpose while being a “lodger” in one of the empty birthing rooms in the maternity ward. Soon the whole staff would know me for my request to sterilize the pumping equipment, until I finally discovered the microwave in the staff kitchen.
My baby meanwhile was starting off with 2 ml per feed or so, of breastmilk through a nasal feeding tube. On day 3 I had some terrible news from the doctor taking care of Jakob at the NICU: Jakob had developed NEC, a relatively serious premie condition where the stomach is starting to disintegrate, potentially resulting in lifelong disability or even death due to an infection.
I was obviously devastated and Jakob was put on “gastric rest” meaning, no more milk but only IV fluids for at least 8 days. He was put on strong antibiotics and I kept on pumping until he finally got better and was cleared for milk feeds after a week with minimal amounts per feed.
The doctor wanted to know what had caused this infection in the first place and ordered some tests on my breast milk. Staph aureus was found in my milk and had also been found in Jakob’s blood during the time of the infection so they assumed that my breast milk had caused him to almost die! He was put on donor milk and I asked to be given antibiotics to “cure” the apparent infection in my breast milk. After some inexplicable delays another doctor told me that it couldn’t be treated as staph occurs naturally on the skin.
So why had it made my baby so sick? Further tests ordered by yet another doctor revealed that the staph strain in my milk didn’t match the one in my baby’s blood and the cause of the infection was likely from the IV line. Finally, he was able to take my breast milk again and things went uphill from there.
It did take him time to get up to larger amounts per feed and to start drinking from the bottle sufficiently to be discharged home after a month at NICU. So far I had only held my baby a couple of times during kangaroo care and was allowed just once to try and breastfeed him, which didn’t work at all and I received no further support at the hospital despite my insistence.
At home we were only preoccupied with bottle feeding, weight gain and the general stress of caring for a tiny baby for the first month but the non-stop pumping and simultaneously looking after the baby started to take a toll and I knew it wouldn’t be sustainable for me in the long term. I had to get the baby on the breast or eventually I would need to switch to formula.
I tried again and again but he just wouldn’t take to it, refusing the breast and crying- the more I tried to force the issue the worse it got! He couldn’t latch on properly and didn’t have enough strength to get even a drop of milk out. I consulted with a professional nutritionist, nurses, doctors, doulas and LLL. We cup fed him so he would “forget” about the bottle and he cried a lot and choked, which is when we wanted to give up. But after about 2 weeks of trying every day to offer the breast at every feed, he finally got it and started to drink with the nipple shield.
We still had to supplement with a few bottles per day, always keeping his weight gain in mind. This went well for a couple of weeks, but the weight gain slowed down and the paediatrician started to get worried and suggested I didn’t have enough milk anymore. I knew this not to be true because milk would squirt out as soon as the baby was close to me.
I eventually decided to remove the nipple shield – initially, Jakob hated the strong letdown and apparent over supply and we had to always have a bottle or the nipple shield with us to avoid a complete meltdown at feeding time. Eventually though, he got used to it and he’s feeding very well on the breast now and weight gain is perfect. The paediatrician cleared us to stop waking up the baby at night for feeds and he now only wakes up once (or sometimes not at all) at around 5am to feed, then sleeps again until 7.
I went back to work when he was 4 months old but working from home means that I can still feed him frequently, although not completely “on demand” (as I have work calls). It took him a couple of days to get used to this, but he is now feeding very efficiently and finishes drinking within minutes. We couldn’t be happier.
The support and information I got from LLL was extremely helpful in my journey. Simone (La Leche League South Africa Leader), provided excellent information and emotional support and was always available to answer my questions. She was never trying to push solutions that wouldn’t have worked for us, which I loved.
(Addendum: Necrotising Enterocolitis is a life-threatening condition involving inflammation of the intestines. Premature babies are especially at risk for this severe condition. The use of formula milk significantly increases the risk of developing NEC; and breastfeeding, breastmilk and donor human milk have a protective influence on the developing gut and in particular from NEC. More reading is available at:
1. UNICEF Necrotising Enterocolitis Infant Health Research https://www.unicef.org.uk/babyfriendly/news-and-research/baby-friendly-research/infant-health-research/infant-health-research-necrotising-enterocolitis/#:~:text=Researchers%20explored%20the%20impact%20of%20breastfeeding%20on%20the,risk%20of%20developing%20NEC%20compared%20with%20breastfed%20infants.
2. Impact of Optimized Breastfeeding on the Costs of Necrotizing Enterocolitis in Extremely Low Birthweight Infants https://pubmed.ncbi.nlm.nih.gov/27131403/ )