The most natural thing in the world can prove the most unnaturally difficult. A powerful and public symbol of motherhood is breastfeeding. It’s a normal and natural means of nurturing and nourishing your new baby. Yet it is not always easy, or possible. A baby’s fibrillin deficiency can intervene and complicate the process, as one mother has remarked to our Helpline.

By Dr Anne Child & Victoria Hilton

Q: I’ve had feeding difficulties with my Marfan syndrome baby since birth due to her high-arched palate and small lower jaw. The baby is gaining weight and thriving through a mixture of formula and pumped breastmilk but it’s very hard to get her to latch effectively to the breast. I wonder if you have any resources that could assist me with our feeding journey?

A: Thank you for your email and for this interesting question which surely affects many mothers of Marfan babies.  Newborn Marfan babies can be treated as a cleft lip and palate baby in the context of nursing, as they need a teat to fill the palate area.

I suggest that you approach your obstetrician to ask if there are special nipples for bottles, which fill the palate area. These may have been designed for babies with cleft palates. If not your obstetrician, then the paediatric department or your pharmacist may know of such helpful devices.

There is an association for cleft lip and palate babies with a useful shop which is currently closed. However, it seems that they are answering questions and may well be able to help you, and send you something. Please visit here. We are asking our dental consultant if a palatal prothesis is every offered in this situation, to fill in the high palate while baby is feeding.

I do understand that you wish to exclusively breast feed your child, as you did her older sibling. I think an experienced midwife would help advise you here. Are you drawing your nipple across the baby’s cheek so she turns toward it as a reflex?

Meantime we have consulted our dental specialist, who is of the opinion that a dental prosthesis to fill in the high palate at this age would probably constitute a choking hazard.

Do let us know how you get on.

We would be grateful if any mother of a Marfan syndrome newborn would share her experience with breastfeeding. Please email [email protected]

The Marfan Trust is registered in England and Wales under charity number 328070 at c/o 24 Oakfield Lane, Keston, Kent, BR2 6BY. Contact us at [email protected] or by phone on + 44 (0)333 011 5256
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