Adjusting assesment in the developmentally delayed but progressing infant.

[Sehille4774]

Hi,

I am taking care of an 10 month old infant (born at 34 weeks) that was born with giant omphalocele s/p repair by graft, Trach and Vent for underdeveloped lungs/pulmonary hypertension.

She was on heavy narcotics for the first 6 months of her life due to all the surgeries but is weaned now. This is the cause for her developmental delay. She is progressing all the time, sitting up on her own now, rolls from back to stomach, hand regard fading, recognizes strangers ect, I would put her closer to 6-8 months.

The parents want to know if she is "making good progress" So I was just wondering how we evaluate what "good" is in a case like this...Do we simply adjust the typical monthly progress scale and evaluate her as if she was a 6-8 month old? Is it reasonable to expect that she will continue to do everything a few months late for her next year or two until she catches up...

If anyone knows of any acceptable "professional quality" sources of info, I would truly appreciate it....It is easy to find info on "the normal baby" but I am having difficulty finding quality nursing sources of information on parameters for the abnormal infant.

Not that word of mouth isnt wonderful :) But I am looking for something that I can show the parents to reassure them that what we are doing is right. They have alot of distrust for the doctors and the nurses.

[NotReady4PrimeTime, RN]

Most children who are hospitalized for the first year or more of their lives will be delayed developmentally due to a number of factors. These can include, long-term sedation and immobility, physical effects of their primary problem, environment, lack of developmentally-supportive therapy/parental involvement in care, and others. For documentary evidence for these parents you could look at:

http://www.informaworld.com/smpp/content~db=all~content=a783768446 (suggested adjustment of the Denver Developmental Screening II for medically-complex infants)

http://jtcs.ctsnetjournals.org/cgi/content/full/133/4/905 (examines outcomes for children following surgery for heart defects, but is applicable to other types of surgical interventions)

http://www.springerlink.com/content/j7h2720llp074124/ (Babycare Link: Collaborative tools to Support Families - you might find this in your hospital library)

http://www.questia.com/googleScholar.qst?docId=9553837 (the Development of Children Born at Risk)

For more, do a Google search with terms like "neurodevelopmental outcomes in medically-complex infants".

[littleneoRN]

She should be followed by a developmental pediatrician and OT/PT should be seeing her. This is what they do and should have resources for the family. They should also be able to perform a standardized assessment periodically to truly assess her progress.