My baby has Down Syndrome and her poor weight gain is killing me

Dear Dr Ombeva,

My daughter was diagnosed with Down Syndrome at two months. She is now five months but she is not adding weight at all. She doesn't sleep at night for more than one hour. Please advise me on what to do because she's supposed to undergo a heart surgery but this can't happen before she adds weight.

Concerned parent Down Syndrome is a genetic condition in which a child inherits an extra copy of one genetic material called a chromosome. Remember that each child has two pairs of the chromosome, while the child with Down Syndrome has all or part of a third copy of chromosome 21. This causes several defects with certain physical and intellectual deficits.

Poor weight gain and feeding problems are characteristic of Down Syndrome, especially when there is a concurrent heart defect called a patent ductus arteriosus (PDA).

A child with Down Syndrome may often have poor muscle tone and almost half of children affected have heart defects, with associated gut problems, that make eating difficult and that might increase the risk of problems such as constipation.

While physiotherapy significantly helps with muscle tone problems, the associated poor weight gain requires corrective surgery of the underlying heart defect.

Majority of children with PDA generally don't gain weight, and show marked improvement with surgical correction. Babies with regurgitation and swallowing problems or constipation may benefit from use of a feeding tube, which delivers the feeds or milk to the stomach.

It is important you take the child back to the attending cardio-thoracic surgeon, and mention these feeding/weight gain concerns. Having the surgery sooner, especially if the child's defect is a PDA or VSD, may cure the feeding/weight gain problem.

The child also needs to be reviewed by a nutritionist and physiotherapist, to address other underlying causes of feeding difficulties, and for the nutritionist to design a favourable feeding regime/schedule for the child.

- Dr Ombeva Malande is a paediatrics and child health expert