Dear Tammy,
I have had the experience of working a mother who had an infant that was
anencephalic. To be specific it was "alobarholoprosencephaly", which is the
most severe form. The mother found out 6 weeks before the delivery as her
abdominal measurements were not right and further tests were done that
confirmed the diagnosis. (AFP and other tests) The mother and family knew
the baby could have hours to weeks to live, or might not survive the labor
and delivery. Fortunately this was a very strong mother and family with
healthy emotional outlook and strong religious faith. The mother contacted
me about a pump and the possibility of breastfeeding the baby for whatever
HIS short life might be. She was praying the baby would live for as long as
possible.
When SHE was born, (with all the tests they still got the sex wrong) the
delivery went well and she was welcomed by loving parents. She had a lovely
little girl's body, but had 6 fingers on 1 hand (her sisters thought that was
really special), a defect of some kind of her sternum, bilateral complete
cleft of the lip and palate, and of course no cerebral cortex and only
rudimentary development of the cerebral hemespheres. Her eyes were bulgy and
head very depressed. With the knitted cap hid most of her cranial defects
and they dressed her in hand knitted booties. They were happy she survived
the delivery so they could get to know her before she left to go to heaven,
as they had told their two little girls. Everyone was invited into the NICU.
She was baptised with as many relatives and friends as could attend. (The
NICU will never be the same) The mom pumped and the baby was gavage fed the
colostrum. The mom and dad practically lived in the NICU as they knew the
baby's life would be measured in hours. She told me the baby wanted to be
held, and would struggle and try to cry when put down on the bed under the
oxy-hood. So they spend most of the 48 hrs she lived holding her. The only
medical care that was given was supportive, some oxygen, a little suctioning
as she was quite mucusy.
She lived about 48 hrs and died in her Daddy's arms. Mom told me it helped
her to pump. When she heard the other moms getting their babies brought to
them, she would pump and take her colostrum to the NICU. She told me it made
her feel good that the baby got her milk. She wanted her to have what any
normal baby would have. The baby was having so much trouble breathing they
kept the oxygen mask on most of the time and she didn't have the energy to
nurse. They even changed a couple of dirty diapers! I counseled her about
engorgement and discussed weaning herself off the pump as I did not want her
to become engorged or have mastitis during the grieving period. Months later
she told me she had pumped for a month!! It helped her to gradually let go
of the baby, and she donated her milk to her sister-in-law who was nursing
her baby and working. This woman's gentle acceptance of a terribly sad
situation has taught me a lot. They prepared their children, friends and
family.
She has given me permission to share her story and I use her wonderful
pictures to present this as a case study at conferences.
Yes, even critical care babies need breastmilk, even for 24 to 48 hours and
their mothers need even more to provide it for them.
Jane Bradshaw RN, BSN, IBCLC
Lynchburg, VA
Hello, I am a student at the University of North Dakota and have
recently researched anencephaly, a neural tube defect in which both
cerebral hemispheres are absent. In my research I found that
anencephalic infants born with an intact brainstem have the reflexes to
smile, cry, and suck (Diaz, 1993). The life expectancy of the
anencephalic infant ranges from a few hours to several weeks. Comfort
care for the infant includes providing fluids, warmth, and nutrition
(Diaz, 1993). Due to the fact that the infant can suck, will lead a
short life, and will need nutrition, demonstrates that breastfeeding could
serve many purposes.
I believe the main benifit in this situation is the way the
emotional bond is enhanced through breastfeeding. An article by Locklin
& Naber (1993) used quotes from mothers to demonstrate the bond formed
while breastfeeding. One woman expressed her feelings on breastfeeding
by stating:
It's like he's part of me, and he's still part of me, I have
what he needs. I give it to him, nobody makes it for me. I
give it to him.
A mother with an anencephalic infant has little time to bond and
be with her baby. What better way to cherish her infant than to hold it
close to her skin, give it warmth, and breastfeed? What a better way to
exchange intimacy? Characteristics of intimacy such as mutuality,
reciprocity, being, joy, harmony, trust, emotional closeness, and the
touch of skin are all evidenced in the breastfeeding experience (Dignam,
1995).
I have been unable to find any research on breastfeening
anencephalic infants. Has anyone seen this implemented in practice? What
were the outcomes? Thank You,
Tammy Kleindl S.N.
References:
Dignam, Denise,M. (1995). Understanding intamacy as experienced by
breastfeeding women. Health Care for Women International 16(5), 477-485.
Diaz, James,H., (1993). The anecephalic organ donor: a challenge to
existing moral and statutory laws. Critical Care Medicine 21(11),1781-1786.
Locklin, M. P. & Neber, S.J. (1993). Does breastfeeding empower
women? insights from a select group of educated, low-income, minority
women. Birth 20(1), 30-35.
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