NOTE: This post relates my point of view. Doctors surely wouldn't have the same. I may be a bit harsh in my comments, but this situation has been so complicated that I still find it hard to put things into perspective.
How it all started
To describe the background, during my partner's pregnancy, our daughter was always reported as very small, without any in-depth research.
After the second ultrasound, six months into the pregnancy, my partner's gynecologist referred her to the hospital, having noted a number of points that raised doubts. The doctors then set up a weekly follow-up to ensure that everything was continuing to progress well.
So the pregnancy continued with this regular follow-up and a, "Your daughter is small but everything's fine". Once she was born, it's true that she was very small (but well-proportioned) and had the characteristics of a premature baby, even though she was born at full term. At the time, the doctors were always reassuring.
We stayed in the maternity ward and were discharged after five days (instead of the usual three), as she was struggling to regain her birth weight. The doctors still showed no signs of concern.
She regained her weight after about ten days. Yes, she was gaining weight, slowly but surely (as they say ).
As we were still in contact with the hospital, due to her short stature and low weight, we were told to change the protocol as she wasn't gaining enough weight and therefore, to increase the quantities of milk she was ingesting.
This was difficult for us, as she was drinking as much as she could given her small size, and increasing the quantities meant overfeeding her. She cried, she regurgitated and we, for our part, resolved to apply this protocol. It was stressful to force her like that. All this while she continued to gain weight (admittedly very little, but she wasn't losing any).
So, for the first two weeks of her life, our daughter was breast-feeding, drinking from a bottle (important for the future), putting on a little weight, but that wasn't enough in the eyes of the medical profession.
What changed everything
After two weeks, a visit to the hospital for weight monitoring was scheduled. Nous y sommes donc allés, le samedi 29 avril 2023. It was only supposed to last a day or two, but it didn't at all 😡.
NOTE: Our problem was surely, to be welcomed in the intensive care department instead of the pre-outpatients.
In intensive care, the cases are more serious and therefore, the medical staff must see more seriousness where there may not be any.
On the afternoon of the first day, we were informed of a discharge, to be monitored at home. The hospital was to provide us with a device to monitor our daughter. But during the installation and explanation of its operation, the nurse noticed that our daughter was desaturating (it turns out that all children desaturate when they're toddlers, but we didn't know that at the time). So the outing was out of the question.
This, plus her small weight and height, made them look for a cause. The doctors had a suspicion of Pierre Robin sequence, which can lead to disorders of oral feeding.
On Monday May 1, 2023 (I'll remember it for the rest of my life), a nurse came in after the shift change and told us it was odd, given our daughter's weight, that she didn't have a nasogastric tube to feed her. About an hour later, after discussion with the doctors (she told us), she came back to put one in, to help her gain weight. This was to complement breastfeeding and bottle-feeding.
NERVOUS MODE: When inserting a tube into an adult, consent is required. Apparently, this is not the case with children.
We signed no document (or none that explicitly mentioned this) and were given no explanation of the ins and outs of such a device.
At the time, we didn't take offence, but today it would be quite different.
It turns out that this had a deleterious effect on our daughter, as it created a dependency on this tube. She would drink, then after her meal, she would be completed by this tube. The problem was that the quantities were too large and she began to vomit regularly after each meal. This had the effect of making her stop taking the breast and bottle. And yes, she associated eating with vomiting and therefore with a negative moment.
When you see your child being monitored, hooked up to wires day and night, undergoing care all day long and losing her joie de vivre, it hurts a lot. I still get teary-eyed just thinking about it, even almost two years later.
In addition, we indirectly became caregivers rather than parents. After a while, we were so independent and accustomed that we did most of the care. And that was a lot of time in a day.
Looking back, that's hard too. This time will not be returned to us, and we're convinced that it should have been time to fully enjoy our daughter and not to be her carers, given that she has no orality disorder but we'll come back to that.
Seven months of hardship
The hospitalization lasted six weeks, during which a whole host of tests (heart, brain, lungs, eyes, etc.) were carried out. Three weeks in hospital and three at home. During this time, our daughter's weight did not change as the doctors expected. She did gain weight, but not significantly. In fact, our daughter has the body she has, and she didn't have an orality disorder as we had been told. Everything our daughter went through should not have happened. We felt it at the time, but it became clear when we looked at her growth curve.
When she was three months old, the doctors suggested a gastrostomy (basically, an operation in which the tube is connected directly to the stomach and accessible via the abdomen) as a possible follow-up, as the nasogastric tube could interfere with the ENT sphere and prevent proper oral development.
It was all too much. In the end, we no longer wanted to be followed by the hospital, preferring instead to find a pediatrician who wouldn't bother our daughter, as was the case with the Hospital. I write that with a capital “H”, because I'm talking about the whole system. Their only vision is based on the child's weight and its evolution. It's true that it's important to their development, but it's not the only thing, and especially not in our daughter's case.
So, for several months, we tried to wean our daughter off her tube. To do this, we put several things in place:
- We made her feel hungry again. This had totally disappeared during the hospitalization, as the protocol was that she had to be fed every three hours, regardless of whether she was hungry or not. In retrospect, we should have been so offended by it.
- We went to the speech therapist every week, from the end of her hospitalization until she was weaned, in order to improve her food intake.
- As soon as she was four months old, we switched to diversification, as we were told that it might trigger something. She took a few spoonfuls, but as she didn't associate eating with the need to feed herself, the tube remained her main way of feeding.
- And many others I won't list... but we never gave up even when, at times, it all seemed insurmountable.
Hope for the future
In the months following the hospitalization, my partner did a lot of research and found testimonials on the Internet from people whose children had eating disorders and who were also trying to wean their children off the tubes. In these testimonials, several mentioned a clinic in Graz, Austria, NoTube, which offered Eating School.
We checked out this clinic to make sure it was serious, and contacted them to see if we could enrol our daughter in one of these courses.
In September 2023, we had a call with the head of administration. The discussions were very good and straightforward (she's French, which helps ).
The description of our situation upset her, but didn't surprise her. This reassured us, and she confirmed that, unfortunately, this was often the case in France, but also in many other countries.
During this call, we were told that we could take part in the December 2023 or November course (if a place became available on the waiting list). For us, this meant a lot after so many months of effort, with no real progress. It was our last hope before telling ourselves that our daughter would live her whole life with a gastrostomy.
A few days later, we received confirmation. We would be taking part in the November course. It was a mix of excitement and joy, but also stress, not knowing if it would work.
Another world
We had an experience that we hadn't expected at all, but which was a real bubble of oxygen.
During the courses, up to ten children are welcomed, along with their parents and siblings, if they have any. This can be quite a crowd 😉. Different nationalities are represented, as the center is open to everyone, not just Austrians.
We were the only French people on the course, so we mainly spoke in English. For me, no problem. I speak English every day for my job. For my partner, it's more complicated. So we took a package deal with a translator. In fact, one person was permanently present with her. And for our oldest daughter (five years old at the time), well, that's the beauty of children: it doesn't matter if they don't understand each other, they play together without question 😆.
It's true that it's rather disturbing to find oneself with people of other nationalities and, above all, no French, with whom it would have been simpler to exchange but in the end, as we're all in the same boat, we get over it and exchange as we can. There was plenty of kindness and a climate of trust was therefore quickly established.
We'd been so used to the constant pressure of talking to the medical profession all these months, that it felt strange here, because there was none of that. It was a real relief. We finally felt listened to. We were able to talk to each other, and we had to, because everything had to be spelled out so that there would be no ambiguity and our daughter would be in the best possible condition.
The clinic is a nursing home. This is a good thing, because you feel less oppressed than in a hospital. Furthermore, the staff don't wear gowns and wear casual clothes. All this makes things less anxiogenic.
The basis of the courses is centered around what they call playful picnics. During these times, the children, their parents and siblings are all brought together in the same room (on the floor, hence the picnic) to share a meal and create a stimulating environment.
These meals take place three times a day, at breakfast, lunch and dinner. In between meals, workshops are organized, also centred around food, and done in a playful way to draw children towards it.
Moreover, a medical check-up takes place every day. It's an opportunity to check-up, report on progress and discuss any issues that need to be addressed.
It may seem nice at first sight, that all you do is eat all the time, but believe me, it's very tiring. The aim of all the parents present is to see an improvement in their child's nutrition. Stress becomes the first factor of exhaustion.
Not seeing any improvement, or not seeing it as quickly as you'd like, is very frustrating. Courses last only two weeks. This is a very short time to change habits that have been in place for months or years.
Happiness restored
So, during this course, our daughter's protocol was to reduce the amount of food supplemented by the tube each day, and to try to get her to eat during the playful picnics.
Speaking of tube, every three weeks it had to be replaced and the new one placed in the other nostril.
The date of one of these changes was scheduled during the Au cinquième jour course, on Friday November 17, 2023 (I'll remember it for the rest of my life). The day before, the teacher (who instigated this clinic) had told us that before coming to the center on Friday, we would have to remove our daughter's catheter and that she would spend the day without medical supervision, of course.
I was ill that day and couldn't go to the center, as some children can be very sensitive to illness, given the pathologies they may have. My partner and mother-in-law went. At the end of the day, when they came back, I saw a little girl who was very tired but so liberated 🥹. She was gasping and trying to move in all directions. Which had never happened in all the previous months (or at least, not to such an extent). A few grams less for so much more happiness.
The team warned us that nothing could be taken for granted. On Saturday, our daughter was tired, as without the tube, the amount of food ingested was greatly reduced. Weight loss was expected and allowed, but only to a limited extent.
Still ill, it was once again my partner who went to the center. The professor gave her her number so she could be reached at any time, even during the night and on Sundays, as the center was not open. We were a bit anxious about being left to our own for the day. But, in the end, it went well. Our daughter was beginning to understand that eating was a vital need.
The second week of training began, and saw our daughter getting better by the day. What a relief. Once again, the team warned us that weaning would take several months and that nothing was certain yet. But still, what happiness!
Then came the end of the course. For us, it was more than positive. It wasn't the case for everyone, but all the children evolved to some extent. We were told that a lot of weaning was done back home. Indeed, daily remote follow-up is carried out after the course. If the child has been weaned, the follow-up is one month, otherwise it's six.
It was time to go home after these two intensive weeks.
We'd left by car. It was already an adventure on the outward journey, but it was even more on the return. Indeed, on the outward journey, as our daughter had the tube, we had a pump to feed her automatically, which, let's face it, was pretty handy. We could not stop 😆.
This was no longer the case on the return journey. All at once, taking regular breaks is a guarantee of safety. But in the end, all went well and our daughter was able to eat her fill.
During the month that followed, not everything was rosy either, but as we were still in contact with NoTube, they reassured us and continued to give us advice.
After just over a month, they declared us fit to fly on our own, although we weren't so sure ourselves.
All's well that ends (almost) well
In the end, our daughter was weaned and hasn't had to be tubed permanently since.
She caught a virus (metapneumovirus) last summer, which affected her respiratory system and made her very tired, so she had to be tubed again, but fortunately this was only temporary (even if we had to fight the medical profession to prevent it from becoming permanent).
NOTE: Metapneumovirus can also lead to respiratory assistance for children with no particular.
A year and a half later, she's still very small and we're trying to find out why. We're turning to other hospitals and other specialists than those who looked after us during her first months, but that's another story.
A final word
As I said in the preamble, it was important to me to write this post because we'd never heard of NoTube before.
NOTE: I have no connection with them and receive no remuneration. I have only gratitude and appreciation for all they have done for our daughter.
Whether during the hospitalization or afterwards, no one in France was able to introduce them to us. Even worse, some people in the medical profession who knew them were rather resistant to the idea of us turning to them. And yet, without them, our daughter would surely have a gastrostomy by now, if we'd only relied on the French medical system.
I wanted to write this post because if you know people around you, or if you hear of children with tubes, gastrostomies or orality disorders, I urge you to tell them about NoTube and tell them to contact them.
There's a considerable cost involved (between the course, travel and accommodation), I admit. But when it comes to our children's health and well-being, it's priceless. More, in France, around 40% of the cost of the course is covered by social security, and some mutual insurance companies may reimburse the remainder. Maybe it is the same in other countries.
We were lucky enough to be able to do so, and above all, that it was a success for our daughter. This isn't always the case, but for all the children who took part at the same time as us, we've seen developments.
Contacting them doesn't commit you to anything, and the first contact establishes whether or not the center can follow up your child, so why deprive yourself?
To the NoTube team: I'd like to thank you again for everything you've done for us and our daughter.