Corinna Kreuzberg is a linguist and language teacher as well as a mother of four young children.
Together with her family and several animals she lives on a farm in Kent.
13 years ago she became ill with depression when her first born child developed a severe eating disorder and stopped eating completely at the age of 3 months.
Here Corinna tells her story.
How feeding my baby made me ill
June 2003 – finally we got the news we had been waiting for: I was pregnant! Everything was organised perfectly – natural birth in a birth center, immediate skin to skin contact, breastfeeding – of course! Everything went according to plan – until week 37. At a hospital appointment the consultant diagnosed that our baby was too small, couldn’t be born naturally and should be delivered as soon as possible. Less than 48 hours later we held our daughter in our arms: Louisa was beautiful; tiny, but healthy. From the moment she was born she wasn’t interested in food. I tried to breastfeed, but because she was small and weak she couldn’t, or didn’t want to, suck.
Two hours into Louisa’s life we heard for the first time the phrase that would determine our life for the next seven months: “Your baby should really eat something now.” She had her first bottle. The private midwives insisted on breastmilk; my first two weeks as a new mum consisted of unsuccessful breastfeeding, feeding with a cup, a syringe and expressing milk. I didn’t leave the house once.
Our first outing was a short walk to the GP who, very concerned, stated that our baby hadn’t gained weight at all and must, from now on, gain 30 grams every day*. I had to take her to the GP every other day to weigh and measure her; had we reached the required 60 grams – bravo! Had we not I had to make up for it the next day.
I spent 14 hours a day force feeding Louisa; with a bottle now, but I had to squeeze every single drop of milk into her. Every feeding cycle took two hours, sometimes more when she vomited, and in order to reach the required amount I had to feed her every three to fours hours, day and night.
When I wasn’t feeding I expressed milk; I didn’t see anybody apart from the GP and Health Visitor. At the eight week check up Louisa hadn’t reached the milestones she should have. Had her brain been damaged due to lack of nutrition at the beginning of her life? We were referred to a paediatrician who couldn’t understand why an otherwise healthy baby wouldn’t drink. He suspected we were neglecting our child and threatened to call social services if her weight gain wasn’t steady. The pressure grew, I force fed and force fed – until at three months of age Louisa stopped eating completely. She would turn her little head away from me when she saw me – always with the bottle in my hand – coming. How heartbreaking it is, feeling rejected by your own, only three months old baby!
Back at the hospital the consultants were quick in putting an NG tube into her nose. What a relief! At that time the tube seemed medically necessary. Feeding time was reduced dramatically. But very quickly relief turned into frustration, anger, despair, and finally into a bad episode of depression. Little did I know by then that this is a common reaction most mothers of a tube fed baby experience, especially if the child is otherwise healthy, without any underlying problems that make oral feeding impossible.
I felt like a failure, I was dreading every mealtime. How could I not be able to feed my baby? Why did she turn away from me? Again I didn’t leave the house at all. I had more time now, but how could I tube feed my baby in public? Before feeding via tube one must check, by pulling up some stomach liquid with the help of a large syringe, that the tube is still in the correct place. Then, very slowly, one pours the milk into the tube, holding it up high above the child’s head so that the liquid runs through the nose into the stomach. Vomiting, choking, retching and reflux are common side effects. Having to re-insert the tube in the not seldom case the baby pulls it out is not easy and usually needs to be done by a specialist nurse.
Ideally the child is seated in a special chair, because handling a baby, the syringe, the tube, the milk and lots of tissues at the same time is just not doable with two hands. Tube feeding is a very cold feeding process, with the only aim of meeting nutritional demands, but not allowing an interactive, let alone enjoyable shared eating experience. And also: What should I say to other mums when asked why my healthy looking daughter had a tube in her nose? No, she wasn’t premature, no, she wasn’t ill either, I just wasn’t capable of feeding her in any other way.
Louisa was blissfully unaware of my state of mind, and for the first and only time in her life she became a chubby baby. I muddled through the days – until one early morning when I woke up, unable to think properly: What did I have to do? How did I have to feed her? What? At what times? How much? Why was I such a bad mother? Incapable of looking after my own and only child. My husband took me to the Psychiatric Unit at Chelsea and Westminster Hospital where we spent the day. I don’t remember much about it , but I do remember that we left the hospital in the evening, with some medication for myself, a halfhearted plan to start seeing a psychiatrist – but still no idea how we could make our daughter eat again. Nobody seemed to know how to wean her off the tube, or for how much longer this was going to last.
Then, one afternoon in spring – Louisa had been on the tube for about 5 weeks now – I gathered together the last bits of energy I had still left in me, sat in front of the computer and started looking for help. There surely must be someone, somewhere who knew what to do! I stumbled across a young psychologist, still a student at the time, from Germany who had experience with children who suffer from feeding difficulties. He had studied at the University Clinic for Children and Adolescents in Graz, Austria which specialises in weaning children off the tube.
7 weeks later Markus Wilken walked through our door. The evening before he came we pulled the tube out of Louisa’s nose – for the first time in three months we could see her pretty little face again without it being covered by medical tape and a yellow tube dangling around her face.
Markus stayed with us for a fortnight; slowly Louisa started eating again. People asked me what he did: he gave me my confidence back. He observed me while I was feeding and guided me through the mealtimes; he assured me that I was doing everything right; he gave me little tasks to complete – to feed Louisa in the park, in a coffee shop, outside her usual feeding times; he reassured me when she didn’t want to eat; he talked with me a lot. The more relaxed I became, the better she ate. Two weeks later the problem, which had been dragging on for so long and which nobody had seemed to be able to help us with, was solved.
I felt happier now, but was still nervous at mealtimes and had a big sense of guilt that everything had been going so wrong right from the beginning. With the help of a very capable psychologist I learned CBT which helped a lot with managing my destructive thinking; thoughts of failure and guilt haunted me for a long time, especially as things still weren’t straightforward, her weight gain was still not ideal and we still had two long hospital stays a the University Clinic in Graz ahead of us. Very slowly things settled down, and only shortly before Louisa’s first birthday we started to have a normal family life.
Today, 13 years later, Louisa is a perfectly healthy teenager.
She is still small for her age and she can still go long periods of time without or with very little food.
And I wonder: Maybe this is just the way she is? Maybe there has never been anything wrong? And maybe, had we not followed the medical advice of force feeding our child in the early weeks of her life, all this would never have happened?
Dr Markus Wilken nowadays leads the Institut fuer Sondenentwoehnung und management (tube weaning center) in Siegburg, Germany. He has developed a home-based tube weaning program and he and his team members travel around the world to work with children and their parents on an individual basis. Louisa was his first patient outside Germany. His program has become one of the world’s leading treatment methods for feeding tube dependency; several studies have been published that show that his method works for about 90% of all cases.
The Psychosomatic division at the University Clinic for Children and Adolescents in Graz, Austria with a special focus on early feeding disorders and tube dependence is run by Prof Dr Marguerite Dunitz-Scheer and Prof Dr Peter Scheer. Together with their interdisciplinary team they have weaned more than 3000 children off the tube in the past 25 years. In order to deal with the increasing amount of foreign treatment requests they have developed the spin-off company NoTubeLLC.