Baby does not gain weight (is completely breastfeeded)

Question

Dear expert team!

My son (4 months old, CF) has hardly ever gained weight since weeks.

The diagnosis was made when he was 5 weeks old and the therapy was started right away. From that point of time he gained weight to our satisfaction.

When he was 2 months old he had an apparently innocuous infection which was treated with antibiotics. When the treatment was stopped, an atelectasis of the upper lobe developped from it very quickly. This had to be treated hospitalized with cortison and antibiotics.

Since then his weight is almost constantly 5,5 kg. To make matters worse he does not drink a lot (approx. 6 x 120 ml breast milk per day) and he never seems to be very hungry and does not like very much to be breastfeeded anymore.

We already tried to bottle-feed him additionally – but he accepts the bottle even less than breast milk.

We are very desperate already because it does not look like as if the situation is going to change soon. Everything is about breastfeeding, weighing, breastfeeding again, weighing again…

Although he is skinny his blood test results, salt and fluid balance is still okay. Altogether he makes a happy and fit impression. In the hospital they recommended us (if nothing changes) to "observe" hospitalized (in-patient).

Perhaps you have another idea how we can help our son?

Answer

Hello,

Unfortunately, your son had a difficult start in his life with CF. For the problems you describe there are certainly different reasons. Generally speaking it is important to know if the atelectasis has re-opened completely. If this is not the case, this alone could be a reason why your son is not drinking very much. If the atelectasis has re-opened, then a reason for the drinking dislike could be the stress he had earlier or else an infection of the oesophagus (gullet) by candida (fungus).

Furthermore, an inflammation of the oesophagus in connection with an gastroesophageal reflux should be excluded. Such a reflux with aspiration could also be the reason for the atelectasis.

If children do not want to drink it is also recommendable to make sure that the upper airways (esp. the nose) are free because a baby cannot drink without getting breathing difficulties if the nose is congested.

Finally it makes sense to consider and to clarify if there is still enough breast milk after all that stress and if possibly the quality of your breast milk has changed (e.g. reduced fat content).

Basically it should also be checked if the amount of pancreatic enzymes that is given together with the meals is sufficient.

You can see that there are quite some points to clarify. This should be considered calmly and together with the medical doctors of your CF center.

Please also keep in mind that due to the whole stress your son might be confused and therefore cannot drink in a relaxed and regular way currently.

You mention that all laboratory results are okay. This is a good sign. At the same time your son seems to be fit and active. This should calm you despite the standstill what his weight is concerned.

We wish you a lot of strengh and strong nerves during this difficult time. I am convinced that your son will catch up the missing weight without problems.

Best regards
Dr. Posselt

17.11.2008