The story of Mimi


The story of Mimi is unique, and at the same time a typical example of eating difficulties for children and young people with congenital heart disease.

Eating is something that Mimi has struggled with all her life. When she did not eat she became tired, breathless and often lost concentration. If she became too hungry, she lost interest in food. Here is her story, told by her mother Pia.

As a young child, Mimi ate just small portions; trying to convince her of the importance of eating at least three to five times a day and with a volume more than a third of the plate has always been difficult. I tried to convince her that she had to eat, even if I wasn’t at home to remind her. At school the teachers, recreation leaders and her resource person constantly reminded her. When she was aged 12 years and in the fifth grade, she started to go home after school and it became harder for me to remind her.

The housewife of the school was a big support because she knew what Mimi liked and disliked. She also checked that Mimi had a nutrition-supplement drink every day because she never drinks milk.

Losing weight

When Mimi was in the senior level of secondary high-school, the new teacher was not very observant. Sometimes lunch consisted of two spoons of rice, or a plate of sour milk and raisins. Stress at lunchtime also worsened, since Mimi wanted to be with her friends and go to the town centre during her lunch break.

The nurse at school was concerned because Mimi’s weight was decreasing. We had a long conversation about how to encourage her not only to eat more but also to eat more regularly. All theories sound so good when you talk them through, and some days they work but then everything fails again.

Through our specialist nurse we contacted a dietician and started to investigate the problems that Mimi had with her stomach. At one point we got the dietician and the “stomach doctor” together. But, despite several tests, Mimi’s stomach troubles continued to be a mystery. To gain weight, Mimi had seven to eight different nutrition supplement drinks. She tested them all, and spurned all apart from one. She drank one at breakfast and one during the extra evening meal. But the nagging about what Mimi should eat continued.

A new theory arose when Mimi went to see her orthopaedist (Mimi also has scoliosis); maybe Mimi lacked a growth hormone? Her skeletal frame was very small, like a skeleton of an 11-year-old girl. They also said that lack of growth hormone might reduce the appetite. So, Mimi went to an endocrinologist.

During this period, I often thought about something a character in a Swedish children’s book had said: “What are you crying for, the kid is all right”. And Mimi was all right, she was a ball of fire, happy and positive. She was dancing; she sang and worked well at school. But I was concerned about how the nutrition problems might affect her in the future; how they would affect her puberty and her skeleton. What if she became smaller than she should have because she was not eating enough?

Mystery solved

Now Mimi has turned 17 years, and everything has changed. Not because of increased understanding and maturity or improved heart function, but because that we, after 16 years of searching, struggles, testing and nagging, at last know why she is uninterested in food and does not grow. She has a chronic inflammation in the intestine. Probably she has had this illness for a very long time and therefore has not been able to absorb the nutrition. And if you constantly have a bad stomach, eating food that makes it worse is no fun—everything became a vicious circle. Her growth had been inhibited. And we don’t even want to think of how this illness has affected her school work, concentration and strength.

It was the endocrinologist who solved the mystery. This doctor, Jenny, was the first to see the whole picture—ie, Mimi’s stomach, heart, spine, puberty—and Jenny did not give in. As I listened to her, I was moved to tears. She had knowledge, and she asked about all Mimi and she acted. She said “I won’t give up; we have to get Mimi’s stomach problems sorted otherwise the rest will never work”.

Not fully investigated

Mimi was referred back to the gastroenterology unit in April, and her doctor there admitted that Mimi wasn’t enough investigated. Mimi’s problems were now going to be investigated fully, with the aim of having a diagnosis before Christmas. Mimi took a fairly new test that shows whether the intestine leaks calcium. 1 week later, the results arrived and the value of calcium was alarming. Mimi was given a drug that is usually given to patients with ulcerative colitis. We saw the results immediately: Mimi started to grow again.

In November, Mimi was given the final diagnosis: she has collagen colitis. The inflammation is microscopic and hard to see during an ordinary physical examination since it is only detectable when parts of the intestine are under the microscope. Mimi got a new drug and is now free of symptoms. She eats like a horse and grows like a bamboo! In the earlier prognosis, the orthopaedist estimated that Mimi would be 163–164 cm, but now the estimation is 170 cm.

So, can you be happy when your child has received yet another diagnosis? The answer is yes; I am very happy! We have got an answer to all our questions, and all our worries have been resolved. Probably Mimi will have to take her medicine for the rest of her life, but there is a chance that she will be free of symptoms.

However, I do feel angry that Mimi has been transferred from one unit to another for so many years. I can be angry about all the stupid answers to our questions, and all the odd treatments that she has undergone. And during all these years, we constantly asked “Shouldn’t you look at her intestines? Despite her heart problems, couldn’t something have gone wrong there, in her intestine?”

Author: Pia (mother of Mimi)