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Professionals

Information for Healthcare Professionals when supporting new parents of a baby with a Congenital Hand and Upper limb anomaly

This page provides information on how to help a family with the unexpected news that their baby is born with an upper limb difference.

Embryology

The developing embryo uses a network of signals which work together to form the hand. This happens in three directions to produce the 3D shape of the fully developed human hand. One of the most important regulators of this development is a protein called sonic hedgehog (SHH). Sometimes, there is either too much or too little SHH, which causes the hand to develop differently.

Lines showing how long an embyro is at several different periods of development

In a recent survey, parents have understandably expressed the need for immediate information and signposting to the third sector for support. They also want to know what the pathway for their baby will be in terms of assessment and possible treatment by the specialist healthcare professionals. View the Early Parental Experience Survey. Click here to view parent/carers stories.

In summary the following information may be helpful:

  1. The baby’s hand and arm are fully formed about 6 weeks after conception and anything which fails to develop happens well before the mother knows she is pregnant. You can therefore reassure the parents that they do NOT need to feel guilty!
  2. If a single limb only is involved, further consultations will happen, but some reassurance can be given that their child is likely to live a normal and productive life.
  3. Just over half of Congenital upper limb anomalies are bilateral, but with no other identifiable anomalies, these babies will certainly need more investigations but are more than likely to live a highly successful life
  4. Where multiple anomalies are apparent, urgent referral is appropriate along with fuller assessment. It is therefore more difficult to offer immediate reassurance. These babies / foetuses should be seen in a specialist foetal medicine / genetics clinic. The use of prospective prenatal exome sequencing allows accuracy of genetic diagnosis and an improved definition of overall prognosis can then be given.

So, what can sonographers and any other health care professionals tell parents when an upper limb anomaly is detected?

Information

Causes

It is not yet clear why Congenital Hand Differences happen

Support

There are several support charities for children and families affected by CHDs

Treatment

Hand differences are rare, and each hand difference is unique.

Common Congenital Conditions

Additional Reading

The references below provide more information about the usual parental responses and concerns and ways in which the first responders can support new parents when the surprising news of a limb difference is identified.

Parents/carers stories

We were told at the 20 week scan that our son’s right forearm was missing. We never found out why. I’m really glad I’ve found Reach. I hope to make friends with people in the same situation as I’ve not really had chance to talk to anyone about this

Our son’s right hand hadn’t fully developed. This wasn’t picket up on any of the scans… We had been referred to a hand specialist and told they’d be in contact within 2-4 weeks. After 9 weeks of constant phone calls from me we eventually got an appointment

We found out two weeks ago at our 20 week scan that our little boy’s right hand and half his lower forearm has not developed… We’re still in shock and trying to process this information…I’ve been told by Reach mums that it will be ok. It’s so hard not to think of teh negatives and I’m so grateful for Reach as we have not had any other help of support from the medical professionals.