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Successful breastfeeding - a paraplegic mother’s experience

Belinda Noda, from England describes her experiences of breastfeeding.

The subject of breastfeeding is not simple. I can’t speak on behalf of other disabled mothers who have breastfed their babies or address those who plan to as everyone’s circumstances are unique. However it has been a key part of mothering my two little girls and I would like to share my experiences, and what factors enabled the three of us to enjoy our breast feeding relationship.

Confidence

I was paralysed in a car accident at the age of 25. Being reassured that my child bearing capabilities were not affected by paralysis was of great consolation. Almost ten years later, after about a year of marriage I became pregnant. Discovering that I was expecting twins did not alter my cosy image of a suckling infant except that I had to stretch my imagination a little further: suckling infants. I never doubted that I would be able to breastfeed which is probably the most important factor in my subsequent success.

Advice

I had heard that some Mums didn’t have enough milk and that some babies didn’t take to the breast. Obviously my health visitor had heard of this too and she very wisely put me in touch with the La Leche League. This contact was, and still is, the second most important factor in my successful breastfeeding. Despite all those soft-focus posters in the antenatal clinics there is an alarming array of problems, discouragement and conflicting advice that can confound the best of intentions. Though it is widely accepted that breast is best it is certainly true that breastfeeding is not without its challenges.

I had read that women with a lesion above T4 might experience difficulty because the stimulus/response mechanism might be interrupted as there would be no feeling in the breast. I am T4/5 and have very little sensation in my right nipple. However, though I couldn’t always tell if the baby was latched on and had to look to see if she was attached, the milk flow was unaffected. I had also read that many paraplegic women have been able to have a normal delivery as contractions are also part of the autonomic mechanisms of having a baby. However, with a double pregnancy the risk was obviously greater and I was happy to opt for an elective C-Section.

Preparation

I attended a La Leche League meeting and borrowed their book The Art of Breastfeeding. With all this information and the support of a few experienced breastfeeding mums I was prepared for the challenges that awaited me.

I was not so prepared when at my 36 week check the obstetrician looked at the scan report and decided that the girls, who apparently had not grown much since the 34th week check-up, should be delivered without delay. We went home to collect my still unpacked bags and returned to a hospital bed where I sat beneath my Nil by Mouth sign reading up on premature babies in my copy of the Art of Breastfeeding.

The delivery went as planned. I was hooked up to an epidural to prevent autonomic dysreflexia. Even though a spinal lesion provides a natural anaesthetic, pain/irritation can be registered by the body in other ways causing a rapid surge in blood pressure, headaches and nausea. It was 09.31 am, August 11, 1994. The girls weighed in at 4 lb. 9oz and 41b. l2oz. Healthy - a good weight for twins. They were taken to the Special Care Baby Unit and the next time I saw them they were in two plastic incubators. Not a good beginning for the ideal breastfeeding relationship. I asked if I could feed the girls but was told they shouldn’t be disturbed as they would be tired. I respected that as they were both sleeping swaddled in tiny hats and cloths with tubes taped up their noses. I came back a couple of hours later, with my epidural still in tow, needles and tubes running into the back of my hands and drainage tubes running from the wound in my abdomen. It was quite a procession: a nurse to push my chair and my mother and husband to handle the tubes and bags.

Determination

Again I asked to feed the girls. The nurse wanted to discourage the idea, I tried to insist feeling it was important to put them to the breast soon as the sucking reflex can be forgotten the more time passes. The nurse was in no mood to be sympathetic to an obviously worried mum. “I really don’t see why. You would just be wasting your time”, she snapped at me.

By the third visit a nurse was ready to help me. She helped me to latch on with all the grace of a gardener attaching a hose to a stand pipe. But finally, for the first time I could feel that it was me that had given birth and here in my arms was my dream realized: my daughter, Erika. To my relief she took to the breast very well. Naomi was a little smaller. She didn’t latch on but I held her close and told her she would soon get the hang of it. After this it was up to me to actually deliver the goods. It was all very well making a big deal about breastfeeding but as my milk hadn’t come yet I had some serious pumping to do.

The epidural stayed in for 24 hours, but once I was disconnected from all my attachments I felt great. I wasn’t aware of any discomfort from my section due to the paralysis so could get up and get dressed as if no surgery had occurred. I spent the next week wheeling up and down the long, long corridors between my babies and my bed at the other end of the hospital.

I had exclusive use of the electric breast pump, Daisy . They told me to pump about every four hours for ten minutes a side. I pumped every three hours for twenty minutes a side. I woke myself through the night to pump and carefully collected each precious drop. The nurses told me to label it and put it in the refrigerator and that they would come and collect it for the night feeds. It was a huge disappointment on the next morning to find that the all but empty bottle had not been collected. After that I always took my offerings myself. The girls were fed through the tubes mostly with formula supplemented with the little I could produce.

Every time I visited them, I put them to the breast, their sucking helped the other fluids go down the tubes. Naomi’s interest increased and soon they were good feeders. The more milk I produced the higher the increase in their daily allowance. So it wasn’t until the eighth day that I produced enough milk to feed them on my milk alone for a 24 hour period.

Once this landmark had been reached the next step was to cut out the tubes as the girls were waking to be fed every two hours or so. I had been spending most of their waking hours with them during the day and visiting once or twice a night. Now I left instructions for the nurses to call me when ever the babies cried so that I could come and feed them myself.

Handling opposition

The nurses told me that as they could no longer monitor the amount they were getting, weight-gain would be probably be slower. Also breast milk is less calorific than the formula. Although we were all working for the best interest of the babies, our methods were at odds.

The nursing staffs aim was to fatten them up to the 51b mark. Until that was achieved the girls could not leave. Of course my goal was to establish breastfeeding and by the ninth day I felt I had proved this. But with their weights still being below the ‘pass mark’ I was extremely worried that because I was now so tired I might begin to lose my milk due to stress. I’d already lost my temper on a couple of occasions with nurses who wanted to bottle feed.

I hated to leave them in the SCBU, which I felt had no understanding of my needs to mother my children myself. They regarded me as a fanatical mother who thought breastfeeding was more important than the weight (which for them was synonymous with health) of my babies. I was confident what my babies needed most to thrive was unlimited access to their mother’s milk and to be held close.

That evening they were to be weighed and if they had gained would be allowed to come up to me on the ward. I fed them all evening and prayed they wouldn’t wee until after the weighing. They fell asleep and I went to lie down. When I returned the nurse showed me the charts; still short of that 5lb. “What a shame. What a shame,” she said, with a tone that came across as, “I told you so”.

I’d really had enough. If only I could get them home where I could relax in the comfort of my own big bed... I prepared my case for the doctor doing the rounds that morning. I literally prayed that he would understand. When he came in he took one look at the charts and said, “What are you still doing here?” My nurse explained how they still were not up to weights, and he shrugged that aside saying that as feeding was going well and mother and children were all doing well he didn’t see any problems at all.

With that the girls were promptly put in a pram and delivered to my ward. I’d requested that cot sides be fitted to my hospital bed so that I could put pillows down each side. It was like a big nest and the girls could sleep close at hand so that I didn’t have to fish them out of their plastic fishtank- like cribs. We spent one comfortable night all propped up in our pillow nest and the next morning the doctor on his round asked, “So when would you like to go home?” Within a couple of hours we were on our way home.

Support at home

The next couple of weeks went well. An important factor was having my very supportive husband, Mitsuo, to help take care of the girls and of me. I fed them and he burped them. I fed them and he made the tea. I fed them and he cooked dinner.

In a rather unhelpful book I have on twins it says, “Some fathers feel that there is not much they can do when their babies are being breastfed....” What a short sighted point of view. There is plenty of cuddling and nappy changing and bathing he can do which will give him ample intimate encounters with his babies, without having to feel left out for not being able to feed them. Mitsuo will assure any one that, though I may have been sole provider of food, he has never felt side-lined. In fact the girls are attached to us equally, sometimes preferring Dad and sometimes Mum; it’s 50/50’!

Realistic expectations

The fourth most important factor was to not make any other plans other than to meet the needs of the children and to expect that I was going to spending a lot of time feeding. Nights were not the problem I’d been warned about. I put two pillows on each side of me and a baby on each pile of pillows so that they were at the right height to feed. I had assumed that once they were asleep that I could move them aside but that plan hadn’t taken into account all the disturbance that fumbling around with four pillows would make. So I learned to sleep on my back with a baby underneath each arm. They needed just a little help to latch on and I could drift off to sleep again.

Sleeping Together

The real reason we opted for a family bed was that I didn’t want to be separated from my little ones and the fear of cot death is almost unheard of in cultures where the family bed is practised. (Though neither parent should be drunk, ill or obese) It’s hard to see why people say they can’t sleep with a baby in the bed but then have to get up two or three times in the cold night, losing so much more sleep than we do. I’ve never had to lift my head from the pillow and Mitsuo has slept undisturbed all night every night since they were born.

Overcoming crisis

In the third week I began to get extremely severe headaches while having a bowel movement. I’ve always used suppositories without any problems but suddenly the whole process became so unbearable it felt as though the pain I thought I’d escaped during birth was now being experienced in a different way. I complained my local family doctor but he didn’t seem to understand the amount of pain I was in. After a couple more attempts on the too, during which I was literally screaming from the pressure in my head, we drove to Pinderfields, my spinal unit, where I was immediately admitted.

It was fortunate that I had not listened to my doctor’s advice to take a few paracetamol and, “Just ride this one out”. An X-ray showed that I was extremely constipated! The pressure was causing autonomic dysreflexia. In the booklet I was given about care of spinally injured patients there is a page dedicated to this condition. At the top of the page it says “Medical Emergency, Can cause death”.

It could have been resolved in just a few days with the appropriate medicine and supervised care. The doctor was very understanding about my small babies and suggested that the whole family be admitted. He arranged for the store room (formerly a three-bedded ward) to be half-cleared out to make room for a bed for me, a big arm chair and a camp bed for my husband. I wasn’t to be given anything too powerful as it would affect my milk but I did have to take something to lower my blood pressure. So for a period of four hours a day I couldn’t feed them. I did have a bottle standing by but Naomi refused anything but me (bless her!). Erika did take a half a bottle now and then but she came out in a rash which I put down to formula intolerance. After 10 more days I was pronounced clear enough to be sent home. The social services were very helpful and provided us with a home help to come in three times a week. A home help is an important factor in successful breastfeeding, especially for a disabled Mum.

When they were just over a year old I developed a pressure sore at the bottom of my spine. It was very inconvenient at first because I was supposed not to lay on my back. As this was how I/we slept I had to try turning from side to side to feed the girls. That didn’t work at all as they often want to feed at the same time. Fortunately my district nurses were very helpful and ordered me an electric bed that was permanently inflating and deflating. It was just wide enough for the three of us, but left Mitsuo very little space so we bought another three foot single bed and attached it to the double so that we now have an eight foot bed. The sore took just over fourth months to heal. I now have a Vaperm mattress and haven’t had any trouble since.

Out and about

I bought a pair of dungarees so that in public I could feed discreetly from behind the bib, even with both at once. I mention this to illustrate how flexible breastfeeding enables one to be and that mum and dad need not be confined to the home.

Relaxed weaning

I introduced solids after six months. The girls didn’t show much interest and continued to eat very little for over a year. It was always reassuring to know they were getting all the nutrients they needed from me. It was not just their nutritional needs that were being met by their extended nursing. It was so easy to be able to comfort them at the breast. Mitsuo could comfort them by walking around and looking out of the window. It seems babies prefer their carriers to stand and loudly object when that person sits down. So it was nice for me to be able to offer an alternative to a distressed little person.

Erika and Naomi are now two years and four months and still enjoy nursing. The two very different, independent characters are growing stronger and when conflict arises Mum is not far away. They can both still find room on my knee and snuggle up for drink as they can now call it. I’m in no hurry to wean. Partly because it’s such a convenient source of comfort and partly because I’m too lazy.

According to information I read, about extended breastfeeding, a normal pattern for a nursing toddler is three times a day and whenever you sit down Consequently it goes on to suggest that when trying to wean a toddler it is better to sit down as little as possible. So I can see that having such an easily accessible knee is an indication that our breastfeeding relationship may well continue for quite some time!

Successful breastfeeding when you’re disabled - some tips and resources

Before you start

Find out who can support you locally. Many countries have networks of breastfeedlng counsellors eg the International La Leche League, the National Childbirth Trust (UK), the Nursing Mothers Association (Australia). Also try and identify experienced mothers, health visitors and midwives - local women whose advice you feel able to trust.

Check your drug intake. Many drugs taken by a disabled mother may appear in the breast milk. Speak to your medical specialist to check whether any drug you are taking is likely to be harmful to your breastfed. baby. Useful publication: Drugs In Breast milk: A Compendium, Available from NCT Maternity Sales 239 Shawbridge St. Glasgow G43 IQN Scotland Telephone 0141 636 0600 Available on cassette: Tel.0181 769 8288.

Get comfortable. Try different positions: eg lying down on your side; use feeding cushions to support the baby (see DPPI Issue No.14 for product reviews). For more ideas on positioning see Where there’s a will there’s usually a way, a guide to breastfeeding where the mother has a disability. It was published by the Nursing Mothers Association of Australia (1982) and is now out of print but they will photocopy for anyone who wants one. N.M.A.A. P.O. Box 231 Nunawading, Vic 3131 Australia. Telephone 03 98 77 50 11.

First published in Disability, Pregnancy & Parenthood international, Issue 17, January 1997.

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