Kaila
Blue is hyperlink
Pink is drop box/definition
Learning Points
Information discussed in the following case, Kaila, emphasizes the
 common neonatal complications of babies born premature and their impact on
developmental outcome
 need to build strong, trusting relationships with parents who may have high support
needs, and
 importance of an integrated system of care for families with multiple service needs.
Kaila is a 6 month old (corrected age) girl who was born prematurely at 27 weeks. Kaila
had many neonatal problems such as bronchopulmonary dysplasia requiring intubation,
urinary track infection, hyperbilirubenmia, apnea and bradycardia. She also had a grade
II intraventricular hemorrhage that brain imaging showed had resolved. She spent 3
months in the Neonatal Intensive Care Unit (NICU).
Her mother, who is described as having some cognitive limitations, dropped out of high
school at 15 years of age and now, at 22, is attending a program for adults with
developmental disabilities. Her mother is also homeless and lives in transitional housing.
Kaila attends an Early Head Start program (child care) during the day while her mother
attends her program. Kaila’s mother, Kaila’s Early Head Start teacher, and the social
worker from the transitional housing think an evaluation of her development is
appropriate.
Although she consented to have Kaila evaluated, her mother is not very concerned
about Kaila’s development. She did, however, express some frustration with Kaila’s
“fussiness” and intolerance to loud noises.
Kaila’s primary child care provider is extremely concerned about Kaila’s physical growth.
Kaila appears very small for her age of 6 months. Kaila’s mother is not sure how much
Kaila weighs but did indicate that her pediatrician is following Kaila for her growth. Kaila
is described as being a “difficult feeder”. She is bottle-fed and is difficult to feed. It takes
her an hour to finish a bottle for the child care providers. Although her mother indicated
that she has no trouble feeding her at home, the primary child care provider indicated
that Kaila often gags and throws up at child care.
Kaila’s primary child care provider is also concerned about her temperament. She
describes Kaila as having a “flat” affect and often cries uncontrollably after hearing a
loud sound. She either does not respond to or has a very delayed response to adult
comforting techniques. Kaila appears to have difficulty with self-regulation. The fire
alarm drills are especially difficult for Kaila and her caregivers. Kaila often wants to be
held by adults.
Her development has been generally slow. Kaila can hold her head up when supported
by an adult. She can roll from her stomach to her back but not back to stomach. She
can sit with the support of an adult or several pillows shaped in a ring around her but she
can not sit upright without support. She has difficulty keeping her head up and eyes
focused when in sitting. She babbles when on her back but not in sitting. She will
respond to her name by looking at you briefly. She is beginning to recognize her mother
and will move her arms and legs when her mother approaches her.
Her mother and social worker (from the transitional housing program) will accompany
Kaila to the evaluation. Her primary child care provider will not be able to attend the
scheduled evaluation. The evaluation is scheduled for the upcoming week.
Discussion Questions- Kaila
1. You will have the opportunity to speak with the mother, child care provider and
social worker by phone prior to conducting the evaluation. What additional
information would you like to obtain prior to conducting the evaluation on Kaila?
Based on the information provided above make a list of questions you would like
to ask.
The answer here would include an open ended discussion with Kaila’s mother
and the beginnings of establishing a relationship with her. During the discussion,
questions about the following would be helpful to the evaluation process:
Strengths: What the providers consider Kaila’s strengths to be, what they think
she enjoys, toys she enjoys playing with, behaviors that they consider are
indicating enjoyment
Concerns: The parent’s concerns, child care provider’s concerns, permission to
contact pediatrician (around growth), questions specifically about feeding and
intake (food diary), medications and hospitalizations since her discharge from
NICU. Additionally the team may be interested in exploring parent’s literacy level.
Health Status: Results of any additional tests or examinations by other providers
such as hearing and vision tests, neurology, follow-up program for babies born
premature,
Social Services: Status of health insurance (Medicaid, S-Chip), relationships with
other social service providers in the community
Home and Child Care: Primary language spoken in the family, description of daily
routines and how satisfied her child care provider and mother are with Kaila’s
engagement and enjoyment in participating in these routines.
2. What is the expected development for a child who is Kaila’s age in each
developmental area?
Discussion should include what is typical for a child at six months in all five areas
of development (cognitive, physical, communication, adaptive and social
emotional) with and without prematurity. Also the relationship between degree of
prematurity and developmental expectations. Resources for handouts and
developmental guides for families can be found at
Center for Disease Control and Prevention, National Center on Birth Defects and
Developmental Disabilities
http://www.cdc.gov/ncbddd/autism/actearly/
Bright Futures for Families
http://www.brightfuturesforfamilies.org/materials.shtml
Zero to Three
http://www.zerotothree.org/site/PageServer?pagename=ter_par_parenthandouts
3. What may be impacting Kaila’s development? Why?
Discussion should include: feeding and growth, her mother’s developmental
disability and awareness of Kaila’s development, her prematurity and
complications like IVH and BPD, her temperament, homeless situation.
4. What are Kaila’s strengths and why would it be important to identify these
strengths?
Discussion should include Kaila’s ability to recognize her mother, the support
system her mother has and her mother being involved in a program, Kaila is in
Early Head Start, she is rolling and starting to sit with support, she is producing
sounds. In addition to the developmental skill strengths the child may
demonstrate what types of behaviors may the mother and or child care provider
bring up during the phone conversation? It would be important to identify her
strengths to inform the Individualized Family Service Plan process and be the
point where interventions start from.
5. What concerns do you have about Kaila’s social situation and how would you
approach this issue during your conversations with her mother and child care
providers?
Answer would include a discussion on the strengths that Kaila’s mother brings to
this situation, her willingness to be involved in a program to improve herself. The
answer should also include a discussion on strategies that would help overcome
her mother’s difficulties in recognizing challenges, keeping tack of information
from the doctor. Asking the mother how she responds to Kaila’s fussiness, what
supports she has in the community. Also, a discussion on how the child care
providers can assist the EI team as well as the mother to make sure everyone is
consistent with the information being shared with the mother.
References
Bassan, H., Benson, C.B., Limperopoulos, C., Feldman, H.A., Ringer, S.A., Veracruz, E.,
Stewart, J.E., Soul, J.S., DiSalvo, D.N., Volpe, J.J. & duPlessis, A.J. (2006).
Ultrasonographic features and severity scoring of periventricular hemorrhagic infarction
in relation to risk factors and outcome. Pediatrics. 117, 2111-2118.
McCormick M.C., Brooks-Gunn, J., Buka, S.L., Goldman, J., Yu, J., Salganik, M., Scott,
D.T., Bennett, F.C., Kay, L.L., Bernbaum, J.C., Bauer,, C.R., Martin, C., Woods, E. R.,
Martin, A. & Casey, P.H. (2006). Early intervention for low birth weight premature infants:
Results at 18 years of age for the Infant Health and Development Program. Pediatrics.
117, 771-780.
Miceli, P.J., Goeke-Morey, M.C., Whitman, T.L., Kolberg, K.S., Miller-Loncar, C.& White,
R.D. (2000) Brief report: Birth status, medical complications, and social environment:
Individual differences in development of preterm, very low birth weight infants. Journal
of Pediatric Psychology, 25 (5) 353-358.
O’Keefe, N. & O’Hara, J.O. (2008). Mental health needs of parents with intellectual
disabilities. Current Opinion in Psychiatry. 21, 463-468.
Resources
Maternal and Child Health Bureau
A US Department of Health and Human Services, Health Resources and Services
Administration (HRSA) bureau dedicated to the physical, psychological, and social
needs of the maternal and child health population.
http://mchb.hrsa.gov/
Support for Parents
Parent to Parent USA
National group that connects parents and providers with parent state wide parent
support groups in their state.
http://www.p2pusa.org/
Prematurity
March of Dimes
Information about prematurity for families and service providers.
http://www.marchofdimes.com/prematurity/
Medline Plus
US National Library of Medicine and the US National Institutes of Health website source
for health information for families and health providers.
http://www.nlm.nih.gov/medlineplus/prematurebabies.html
Permaurity.org
Volunteer supported website to support parents with premature infants.
http://www.prematurity.org/
Developmental Disabilities
Administration on Developmental Disabilities (ADD)
http://www.acf.hhs.gov/programs/add/
American Association on Intellectual and Developmental Disabilities (AAIDD)
http://www.aamr.org/
University Center of Excellence at Georgetown University
http://gucchdgeorgetown.net/ucedd/
Homeless
Bright Beginnings
http://www.brightbeginningsinc.org/
Annual Homeless Assessment Report to Congress (2007)
http://www.huduser.org/Publications/pdf/ahar.pdf
National Coalition for the Homeless
http://www.nationalhomeless.org/
Fact sheet on homeless families with children
http://www.nationalhomeless.org/publications/facts/families.html
National Early Childhood Technical Assistance Center (Nectac)
 Homelessness and Young Children: Early Childhood Care and Education
http://www.nectac.org/~pdfs/pubs/homeless.pdf

Fact Sheet on Vulnerable Young Children
http://www.nectac.org/~pdfs/pubs/factsheet_vulnerable.pdf
Early Head Start
Early Head Start National Resource Center@ Zero to Three
http://www.ehsnrc.org/
Early Learning and Knowledge Center
http://eclkc.ohs.acf.hhs.gov/hslc
Office of Head Start
http://www.acf.hhs.gov/programs/ohs/
Drop box/ definitions
Apnea- short periods of stopped breathing due to immature or irregular breathing
patterns in premature infants.
http://www.nlm.nih.gov/medlineplus/ency/article/007227.htm
Affect- a psychological term for emotional expressiveness. Lack of emotional
expression may be a sign of concerns with social/emotional development.
Bradycardia- slow heart rate often due to an episode of stopped breathing (apnea).
Bronchopulmonary dysplasia (BPD)- chronic lung disease that develops in preterm
infants as a result of treatment with oxygen or ventilation required because of respiratory
distress. Although not well understood, infants with BPD have smaller or fewer alveoli
and insufficient blood vessels within the lungs leading to decreased surface area to
oxygenate the blood.
http://www.emedicine.com/ped/TOPIC289.HTM
http://www.nhlbi.nih.gov/health/dci/Diseases/Bpd/Bpd_WhatIs.html
Corrected age- a full term pregnancy is estimated to be 40 weeks from the mother's last
menstrual period. The Corrected age (CA) is based on the age the child would be if the
pregnancy had actually gone to term. Corrected age is calculated by subtracting the
number of weeks she was born prematurely from her chronological age. Most
developmental specialists will correct up to two years of age.
http://www.pediatrics.emory.edu/divisions/neonatology/dpc/faq.html
Hyperbilirubenmia- increased levels of bilirubin, or by product from blood cell
breakdown, in the blood stream. High levels lead to yellowing of the skin and eyes and if
untreated, may lead to damage the brain and hearing of a new born infant.
http://www.cdc.gov/ncbddd/dd/kernichome.htm
http://www.nlm.nih.gov/medlineplus/ency/article/001559.htm
Intubation – medical procedure where a tube is placed into the trachea to open the
airway and deliver oxygen.
http://www.nlm.nih.gov/medlineplus/ency/article/003449.htm
Intraventricular hemorrhage- bleeding into the fluid filled areas inside the brain
(ventricles). The amount of bleeding is categorized by 4 grade levels with I and 2
representing a small amount of bleeding and 3 and 4 more severe bleeding. Levels 1
and 2 do not usually result in long term damage to the brain, 3 and 4 may result in long
term problems.
http://www.nlm.nih.gov/MEDLINEPLUS/ency/article/007301.htm
Neonatal Intensive Care Unit- intensive care unit specifically designed for critically ill
newborns.
http://www.nih.gov/news/pr/nov2006/ninr-01.htm
Urinary track infection- infection along any part of the urinary tract including the bladder,
kidneys, ureters and urethra.
http://www.nlm.nih.gov/medlineplus/ency/article/000521.htm
Hyperlinks
Prematurity
http://www.nlm.nih.gov/medlineplus/prematurebabies.html
Healthy people 2010 objectives and MCH
http://www.health.gov/healthypeople
Developmental Disabilities
http://www.acf.hhs.gov/programs/add/
Homeless
http://www.nationalhomeless.org/
Early Head Start
http://www.ehsnrc.org/