Trisomy 18

Q: I am a mother to a 6 months old Trisomy 18 (T18) baby with congenital heart disease (Truncus Arteriosus). Since not many of T18 babies can make it for more than 2 months, I must say that I am exhausted of reference on how to offer best level of comfort to my child. My concern now is that at  6 months old, she only weigh approximately 3.45. Being fed via NG tube. According to our current pediatrician, she may have to stick to NG tube for quite sometimes. I did some reading about feeding for T18 baby.Some parents opt for G Feeding as it will assist their baby to be well fed with at least some soft food.  I would appreciate if you can share your opinion of best feeding method for T18.  Do you know any organization who offers help for T18 baby? or at least support group for parents. This is not an easy period for us. Its good to  know if there is group that we can share experience or at least learn from each other. Please help. Thanks (Ezri)

A:

Dear Ezri,  First and foremost i would like to congratulate you on the birth of your precious child.  Caring for a child with T18 is both an emotionally and physically challenging task for you and your family.

Providing care for a child diagnosed with T18 is challenging as there are several different presentations of T18 and with each presentation there are different ranges of problems encountered hence management of a child with Trisomy 18 is  “individualized” and would best be advised by your attending paediatrician.   However I will try my very best to answer your questions.

1. What is the Best feeding Method For T18

Feeding problems in a child diagnosed with T18 is a consequence of difficulty in breathing, sucking and swallowing. As a result  these children can have choking episodes, reflux  and sometimes vomiting. There are a few options which can be considered:

1. Feeding tube – tube inserted through the nose (nasogastric tube) or tube inserted through the mouth (orogastric tube).

Some babies eventually learn to coordinate their suck and swallow, but Dr. John C. Carey, medical advisor for SOFT (Support Organization For Trisomy 18) notes that those not able to do so by about 6 months of age, are unlikely to progress to bottle or breast feeding.  Eventually many parents have a choice of:-

1. Gastrostomy tube (G-tube) – tube placed through the tummy.
2.  Feeding only by tube or fed both by mouth and by tube.
3. If needed your baby might be referred to a feeding specialist to help with feeding problems, or to a gastroenterologist for evaluation.

3. At  6 months old, she only weight approx 3.45kg, being fed via NG tube.

I also understand that you are concerned about your childs growth.  Children with T18 are smaller at birth and grow slower compared to other children hence there are special growth charts available developed by Dr Baty which is available on the following website – http://www.trisomy.org

Perhaps if you may also ask your attending paediatrician if there are any special formulas or supplements that you can add.

4. Are there any organizations who offers help for T18 baby

There are support groups which I am sure that you will find helpful. These support groups are based overseas but they are very informative and interactive.

Read also:-

• S.O.F.T. http://www.trisomy.org
• S.O.F.T. (UK) http://www.soft.org.uk
• Trisomy Online http://www.trisomyonline.org
• National Organization for Rare Disorders http://www.stepstn.com/cgi-win/nord.exe?proc=Redirect&type=rdb_sum&id=217.htm

( answered by Dr Charlotte Jane Joseph )