Reproduced from 'Essence' magazine
Volume 42, Number 1
Exclusively for ABA subscribers

by Alma Boeve-Kroese

Don't say it is impossible!

the lactation history of Cornelius Boevé

Cornelius was born in Cairns in July 2003 with a very wide unilateral complete cleft lip and palate. He also had club foot and an extra thumb. In the subsequent days and weeks he was also diagnosed with Down Syndrome and holes in his heart...

Cornelius did not attach on my breast properly, which scared me. I wondered how I could bond with a baby who wouldn't breastfeed. However, despite his very wide cleft, he eventually attached and began feeding properly by himself. He did not have a strong suck and sometimes I was not sure that he was feeding properly, but was just grateful he was feeding at all.

While we were in hospital, his feeds were sometimes supplemented with expressed breastmilk through a tube, due to his low nappy count and lack of desire to feed. Some midwives preferred to use a dropper to feed Cornelius, but that seemed to distress him much more than a feeding tube. I hand-expressed some milk as I was determined to avoid using artificial baby milk.

The paediatrician would not give us permission to leave the hospital until Cornelius was able to drink his expressed breastmilk supplements with a special bottle designed by CleftPals* - it was a squeeze bottle with a valved teat. Finally, I was able to bring Cornelius home when he was nine days old.

In hospital we used the teat without the valve but at home I used the valve, as it stopped the milk from flowing back into the bottle. This feeding system was not ideal, as Cornelius did not like drinking at all and fought against feeding, often choking several times each feed. So we investigated other feeding options. We also tried a variety of teats but they all disappeared completely into his cleft.

When Cornelius was two weeks old, he was diagnosed with a serious heart condition. We were told he needed open-heart surgery within two months and we were hoping to fatten him up to four kilograms before the operation. The aim was to maximise the amount of nutrition Cornelius got and this became our top priority. Fiddling with breastfeeding was a waste of his energy, so the bottle was not a supplement anymore - it became his only food.

I was still determined to breastfeed Cornelius, especially considering he had a higher risk for infections. So I kept expressing breastmilk. Due to Cornelius' increasing demand for milk (and therefore my depleting energy levels to express), I found I needed a breast pump - I had not previously liked the idea of using one. I breastfed my three older children for about a year each, but wasn't ever able to express enough for a feed. It's a very personal thing - electric pumps didn't work for me at all as I could not trigger the let-down. Luckily, I finally found a manual breast pump that worked for me.

I managed to keep expressing by taking it one day at a time and somehow managed to express until after Cornelius' palate repair when he was eight months old. But it wasn't easy and it is so much harder when your baby is not at the breast at all. Your body is programmed differently - for example, when I heard Cornelius crying, I had trouble expressing as I felt the urge to go to him and couldn't relax to trigger milk let-down.

My husband's support was crucial - it was so strong that sometimes it felt like he was pushing me to keep going against my will. There was one incident that made expressing easier for me. We were out on a day trip for too long and I started feeling engorged as I was long overdue to express. When I finally found a convenient place to express (parenting rooms are prolific in Australia), my 'catch' was an all-time record! From then on, I reduced the frequency of expressing to four times a day, would only express if I was relaxed and would wait until my breasts were full to ensure a proper let-down. If I needed to increase my supply, I would stay up late to get more milk - mornings were never a problem for supply.

Gradually, my days did not revolve as much around expressing - I expressed four times a day and each expressing session was over within 20 minutes. Expressing became a much-needed 'time out'.

Another positive step in the feeding process came when Cornelius was four weeks old and we started feeding him positioned on his side. The Child Developmental Unit in Cairns lent us a circular feeding cushion. Using this, he was positioned both upwards and sideways, with the good side of his mouth down. We had less physical contact (but we made up for this in other baby activities) but it allowed for one free hand and it was a good position for burping as he couldn't vomit or choke. When feeding this way, I even had one hand free for a cuppa! This positioning was also better for his heart condition. Sometimes it seemed as if we were in a vicious cycle - his heart condition affected his energy to feed yet we needed to get his weight up to a safe level to operate. On top of this, the cleft operation couldn't be performed until his heart was repaired.

Feeding was a tremendous struggle and caused a lot of heartache. Most of his bottle-fed life, we have been the only ones able to feed him, as feeding required persistence. Other people tried, but usually gave up before he could drink 40ml. At the time I had never heard of the term 'oral defensiveness' so feeding the little guy seemed cruel. His heart condition didn't make things any easier. He failed to thrive and even though we supplemented each expressed breastmilk feed with Polyjoule (extra carbohydrates), he was still only 3.14kg at 10 weeks old when we went to Brisbane for his open-heart surgery.

Three weeks after his open-heart surgery, Cornelius was ready to have his lip-repair procedure. What a joy to finally see him with a complete face - it felt as if he had just been born! We were so proud.

After the surgery we used his own bottle to feed him. It was fitted with a dropper attachment* (witch's peak) and also a 'bean-scoop' attachment* (both available through CleftPALS). The dropper seemed easier at first, but we were glad we also had the bean-scoop attachment as this helped make the milk flow visible before it entered Cornelius' mouth. When Cornelius got used to this feeding method, it was easier for us to match his feeding pace.

Unfortunately, the bean-scoop attachment was not the miracle we were waiting for, as Cornelius continued to fight being fed. We switched back to the original teat and as he became older and more aware of what was going on, we needed to find new ways to feed him. As soon as Cornelius realised he was drinking, he would scream and stop feeding. The only way we could cope was to feed him in the dark (when he was drowsy) and limit his feeds to four times per day.

When Cornelius was eight months old, we travelled to Brisbane again for his palate repair operation. I was still expressing breastmilk and had decided to introduce solids after his operation. On the trip we carried our usual assortment of feeding paraphernalia - a cooler bag with frozen milk stock, bottles and a breast pump. During the whole process we moved a total of 14 times - to hospitals, motels, guesthouses and accommodation offered by our newly-made friends. We had never been in Australia before Cornelius was born and initially only planned an eight-week trip for the birth, intending to return home to Papua New Guinea after that.

After the palate repair operation, the first thing Cornelius was able to tolerate was custard. We got the doctor's approval to continue using Cornelius' feeding teat after the surgery, as he saw how soft and flexible it was. With the newly-closed palate, Cornelius was now able to create proper suction. The teat was now too fast for him, maybe because swallowing hurt.

Feeding continued to upset Cornelius and our method was to catch him unawares. My husband Marco discovered the 'bib trick'. Cornelius began sucking on everything other than bottles, with a preference for material things such as his bib. While he was doing this, Marco would slip the bottle into his mouth so he wouldn't notice and gently replace the bib with the bottle teat.

I wanted to try breastfeeding again, even though I didn't get any good advice. I read in an Australian Breastfeeding Association brochure* about a woman who tried for six weeks and finally succeeded. I read about a woman in the US on the Internet who lasted only a week before switching to bottles. I got a 'Supply Line' (see note) planning to use it once we were back in PNG.

Cornelius' sucking ability gradually improved during the first week after surgery. Within that first week he needed to have another anaesthetic for a hearing test. As he recovered from the anaesthetic, I noticed his sucking motion became quite vigorous and I was hoping that it was strong enough for breastfeeding. I decided to attempt switching back to the breast 'cold turkey', that is, I would not give him anything else or feed him in another way. Maybe it sounds cruel, but so far in Cornelius' short life, it has been the feeding rather than the fasting that has been cruel.

Two days later we attempted the experiment, as our three-year-old was staying with a friend. We tried early in the morning when he was least resistant to feeding. I attempted to use the Supply Line, but it upset Cornelius so I gave up. We then tried the 'bib trick' but with the breast instead of the bottle. Sure enough, after a few attempts it worked! He sucked for a long time, as if this was the most normal thing in the world for him to do. Each attempt at breastfeeding for the rest of the day was a struggle, but eventually we succeeded and he had four successful breastfeeding sessions that day! To be honest, I was almost ready to give up in the evening just before his fourth breastfeed, but the next morning he continued to breastfeed as if it came naturally and he has loved it ever since! It was as if he realised this was the proper way to feed. After eight months of difficult bottle feeding, Cornelius had managed to switch from the bottle to the breast in under 24 hours!

I hadn't even realised that there were other rewards from breastfeeding for Cornelius, such as the excellent oral stimulation from comfort sucking that he didn't get from bottle feeds. Our little boy also became a totally different person personality wise and the bonding from breastfeeding was wonderful.

A few days later I took Cornelius to the hospital yet again, this time to get another grommet put in his ear. This had not been possible during his palate surgery as he had an ear infection. It was great not having to carry a bag of frozen milk with me to the hospital - all I needed was me!

When we left Brisbane, I poured my excess expressed breastmilk down the sink - nothing to declare at Customs this time! I felt like a brand new mum and my body responded as if I was breastfeeding for the first time, adjusting to baby's demand, feeling engorged and leaking! It is hard to describe the joy we experienced when breastfeeding finally worked. As I write this, Cornelius is 18 months old and still enjoys an early morning and a bedtime breastfeed.

Alma Boeve-Kroese
Ukarumpa, Papua New Guinea

Notes and further information:

• Alma says that amongst other conditions, Cornelius also had clubfoot and an extra thumb. She says that "not only did he look weird, he also felt weird, floppy like a rag doll". Later, he was diagnosed with Down Syndrome and then a serious heart condition.
• The Supplyline is no longer available and has been replaced by a breastmilk supplementer, which is available through Mothers Direct.

CleftPALS stands for Cleft Palate and Lip Society.
CleftPALS Qld Inc.
PO Box 346, Red Hill
Qld 4059 Australia
Email: cleftpal@powerup.com.au

CleftPALS National office:
PO Box 475, Lane Cove
NSW 2066.
Website: www.cleftpals.org.au

CleftPals have a range of feeding equipment for babies with Cleft Palates.