"Our Eating Adventure"

A bit of history

Our daughter Esther was born in March 2012 after a pregnancy of 33 weeks. During the pregnancy Esther was already diagnosed with Down syndrome and a serious heart defect, called AVSD.

These circumstances made if very difficult for Esther to suck and drink. It was hard enough for Esther to breath. She couldn’t do anything else at the same time. Nevertheless, we did try to make her drink when she was a few weeks old, she took about 10-15 ml from the bottle at a time and was bottle fed about 2-3 times a day even though she was coughing and ‘choking’ regularly. The rest of the milk was given via an NG-tube.

When Esther was 7 weeks old, she came home from the hospital and we carried on with the same regime, but she started choking regularly so we had to stop bottle feeding her until her AVSD operation.

Esther’s heart operation took place when she was 3 months old. The doctors were all predicting that Esther would now start to drink but we could hardly notice any improvement. She did accept a few drops of milk or porridge, but it was almost nothing. We carried on trying and got help from many different professionals, who really tried their best. We went to a sensory group where Esther did messy play. Everyone kept telling us: ‘Keep on trying’, which we did…

We knew Esther didn’t have any physical problems, she was able to swallow. We felt she was traumatised by all the choking when she was a very little baby. She wasn’t interested in food, though she always joined our family at the table while we were eating. She was happy to eat the froth of my coffee if I had one. But that was about it.

We didn’t think it was needed for Esther to be fed with a feeding tube (in the meantime she had gotten a mini button) for the rest of her life and at the same time we didn’t know where to get help to get Esther eating. Until one of our professionals mentioned Midlands Psychology….

CCG

It wasn’t an easy road to get funding to start with the programme of Midlands Psychology. We had to go to our GP, who applied for funding for Esther at the CCG. Though the CCG rejected initially, our GP was on the ball with it. He believed that something should be done about Esther’s eating problem and he wasn’t going to accept a ‘no’ from the CCG. So we sent the papers back and tried again. This time we were accepted for the funding and the programme was about to start…

Midlands Psychology

On a beautiful day in June 2015 Clarissa and her lovely assistant Jas came out to our house to get to know us and to find out more about Esther’s background. They filmed Esther while she was playing with food. She was blowing lots of raspberries and snot bubbles and sneezing a lot. This was an aversive reaction to the food.

Clarissa knew what food to offer to Esther: CHOCOLATE mousse! Who doesn’t like chocolate? And if you do eat it, you take in many calories! So why not?

Since that day Esther and I had to play with chocolate at least 3 times a day. We put the chocolate mousse on the tray of her high chair and stirred with our fingers in the chocolate mousse, making ourselves very messy. Put some chocolate on your nose, put some chocolate on your cheeks… and do you dare to put some chocolate on your lips? ?

I had to write down in a special graph how many times Esther touched the chocolate mousse and how many times she brought it to her mouth. This created the ‘pressure’ I needed to keep doing it at least 3 times a day as I was told by Clarissa. How could I show her half empty papers while I had just received a huge funding? And what if I didn’t follow the instructions very well? If this programme wasn’t going to work, what options did we have except to tube feed for ever? So I kept doing my ‘homework’. I did the daily feeding sessions and filled in the graphs and papers, though it was stressful in the midst of a busy family life.

About 6 weeks later Clarissa and Jas returned to our house and they noticed Esther was less aversive towards the food. Esther had also shown interest in licking some food. I was now encouraged to move on and make sure that Esther would lick the chocolate at least 3 times during an eating session.

Again I had to fill in the papers and graphs and I received weekly phone calls from Jas to ask me how things were going. She always had good suggestions what I could do if I even had a very little problem, she was so helpful.

We carried on for weeks and weeks and weeks: Papers and graphs to fill in a few times each day, weekly phone calls, bi-monthly visits, etc. During each visit the expectation of Esther’s eating skills were raised a bit more. We started from touching the food, to licking the food 3 times. Then we expected her to lick the chocolate mousse at least nine times during an eating session, while I sat on a stool behind her high chair. I was holding her hands in my hands whilst holding the spoon and the pot as well. Together with her I tried bringing the spoon to her mouth 3 times in a row. It didn’t matter whether she would swallow the food or not, just bringing it to her mouth was enough for now. I had to put a mirror in front of Esther so she could see what she was doing. Esther started to accept more and more food, though she swallowed very little, maybe a few drops during an eating session. But Clarissa was always so encouraging. She always noticed improvement and always believed in the end goal: for Esther to eat independently.

Do it yourself

After about 9 months Clarissa thought it was time to decrease the tube feeding significantly. Esther now had all the skills to eat, she just didn’t do it yet because she wasn’t feeling hungry. And I felt ready to have a go at it. So we no longer gave Esther her daily portion of 500 ml milk through her tube any more, but only 100 ml in the morning and 100 ml in the evening. During the rest of the day she had to feed herself.

Of course she didn’t really know how to do this yet and even started to fight against the idea. She became more aversive to the food again and didn’t want to have anything to do with it. Whenever I offered her her chocolate mousse, she would start screaming. Whenever I would sit down behind her to help her eat, she would try to push me away and scratch my arms with her nails. I tried to persevere but after more than two weeks I started to feel very low myself. I thought Esther wasn’t going to learn this and we may end up with tube feeding for the rest of her life…

One morning – we had now been without little tube feeding for a month! - we tried again to make Esther eat but she was so aversive we weren’t getting anywhere. I stopped and decided to bring my other children to school and try again when we were back home. We got the chocolate mousse out again. I sat down again behind Esther with the mirror in front of her on the table. Again Esther started to push me way and to scratch my arms. I had a lot of red stripes on my arms. I felt like giving up, but persevered. And thank God I did, because that morning Esther picked up the spoon and started eating! ! ! She swallowed her food. Not just once, not just twice, but many many spoon fulls.

Since that day she has never stopped eating. We are no longer counting drops of food, we were counting pots of food! She eats not only chocolate mousse but also yoghurt, tomato soup and blended dinner. And she is doing it all by herself. Since she picked up her spoon on that blessed day, she has never allowed me any more to feed her. She wants to do it herself.

Three months later we stopped all the tube feeding. She is no longer taking any milk through her tube and she is growing slowly but steadily. She is not yet taking any liquids through her mouth, but we trust it won’t be long before she learns. We know now that with diligent trying and with prayer she is able to reach great heights and we will get there. Though she isn’t really eating any solids yet, she finished a whole bag of quavers last week. Doesn’t that say enough?

Thanks

We are so thankful to Clarissa and Jas who have helped us consistently throughout the programme. They were always available to talk on the phone or reply to e-mails. They knew how to break down all the steps we had to take into really, really small, tiny steps. They gave me all the homework and enough pressure for me to feel I couldn’t get away with it, I had to do it. (In contrast to all other specialists who gave me too much freedom. They couldn’t get in touch with me weekly. They didn’t ask me to write down what I did daily, so on busy days I sometimes did nothing. They really tried their best, but the services just didn’t have the knowledge and capacity to give us the support we needed. )