Q: What experience has anyone had of trisomy 18 (Edwards
syndrome) in a natural birth, homebirth situation? This is
what mum would prefer but has been told that possible
complications may require a cesarean.
-L.T.
A: We recently helped a mom with a trisomy 18 baby deliver
at home. She found out about three weeks before the birth
and knew that he had multiple anomalies incompatible with
life. The consulting doctor did not have a problem with her
having a homebirth/homedeath. He was delivered, in a
double-footling breech position, after a fairly short labor.
Baby Noah lived for an hour and died in his daddy's arms. I
am wondering what complications for your client would
necessitate a cesarean? Babies with trisomy 18 generally do
not live very long and it seems that the risks would
outweigh the benefits for both mother and child.
-Holly Richardson, CPM
====
A: The organisation SOFT is a wealth of knowledge on trisomy
18 and trisomy 13 (Patau's syndrome) as well as related
disorders. They have an office in the United States as well
as Australia and the UK. Unfortunately, I cannot get the USA
web page to come up but if you go to the UK home page at
http://www.soft.org.uk/ and click on the CONTACTS button,
there is information on how to contact the US group. They
provide booklets on all sorts of different aspects of
trisomy 18, and local support groups are available.
In investigating trisomy 18 for a client a long time ago
when I was living in the UK, I found that many of the
"facts" surrounding trisomy 18 and the prognosis for these
babies were in fact myths. I had had a client who had
previously chosen to terminate a pregnancy with her first
baby, who was diagnosed with Edward's syndrome because the
prognosis was that he would never survive childbirth.
However, I discovered that it is very difficult to determine
the extent of the syndrome and that in fact many babies
lived beyond one year when they had full Edward's (10%), and
those with partial or mosaic Edwards had an even better
prognosis. It's a terrible tragedy that so many parents are
given so much inaccurate information and make choices that
are not informed in any way.
-Nikki Macfarlane, CBE, doula
Singapore
http://www.parentlink.org
====
A: Why perform major surgery on a mother when the child has
a condition incompatible with life? Trisomy 18 babies rarely
live long. To even suggest cesarean as a possibility is
medical abuse unless it is for a complication related to the
mother's well being. This baby should be born at home to
protect both mother and baby from unnecessary medical
intervention in a very private, sorrowful, and holy event.
Monitor the baby only if mom has a need to know how baby is
doing. Find a friendly ND or MD who will agree to come at
the last minute and quietly note time of death and sign a
death certificate. Make sure the family has sufficient time
to bathe, love and take pictures and footprints of their
child before relinquishing it. It helps to call the coroner
ahead of time to let him know that you are attending a home
labor with a baby who has been diagnosed with a condition
incompatible with life. Tell him a doctor will be present to
confirm time of death. This will protect you from any
unnecessary inquiry. The funeral home can pick up the baby
when the family is ready, or they can choose to have a
trusted friend or family member transport the baby by car
themselves. A car seat can be used. Call the funeral home to
let them know baby is coming.
Two weeks ago I had a mother who gave birth to a trisomy 18
baby. Unfortunately, the problem was not picked up until an
ultrasound at term to rule out IUGR. Because there was no
time to perform chromosomal studies for a positive
diagnosis, the perinatologist encouraged the parents to give
birth in the hospital. However, the baby also had a major
diaphragmatic hernia with the liver displaced up next to the
heart as well as a ventricle septum defect of the heart.
Despite the parents' expressed wishes to have the baby at
home if it was not viable, the physician continued to offer
them hope if they would stay in the hospital "just in case
it wasn't a trisomy." I believe this pressure was based more
on fear of liability than an actual belief that the baby
wouldn't have a trisomy or could live through the necessary
surgeries. It wasn't until mom was four hours into a cytotec
induction that the parents had the opportunity to consult
with a neonatologist about the seriousness of their baby's
problems. At that time the parents discussed going home to
have the baby. The neonatologist supported this choice, but
the perinatologist was upset. The couple decided to stay for
the sake of an epidural. This was mom's sixth birth and she
had never had pain medication before. She said she wasn't
certain that she could cope with both the pain of labor and
the pain of loss at the same time. This was a valid choice.
No one can measure another's grief. Sadly, the epidural was
largely ineffective.
Our biggest fear was that the baby would be removed from the
parents at birth and they would not be allowed to be with
him when he died. The fact the parents had considered going
home helped the doctor accept that they did not want any
heroics. When the baby started to have severe heart rate
decels into the 50s with slow recovery, the possibility of
cesarean section was brought up by the doctor. Fortunately
we had already discussed this ahead of time and the parents
refused consent for surgery. The doctor agreed that this was
a reasonable choice under the circumstances. (But why was it
"irresponsible" to go home to have their baby if this was
OK?) He removed the electronic fetal heart monitor and let
the labor continue. When baby was born, the diagnosis of
trisomy 18 was immediately confirmed and he was placed in
mother's arms to die. He never took a breath. He only felt
tender arms, gentle kisses, and heard whispered "I love
you's." It is a midwife's sacred honor to walk with families
when life is coming in and sometimes when life is going out
as well. I send you my prayers as you walk this journey
together.
-Maryl Smith
====
A: How sad the mother has been told she can't deliver a baby
with trisomy 18 at home! The abnormalities involved in this
syndrome should cause no problem whatever in birth, unless
perhaps it is associated with polyhydramnios. The only one
I've seen born was a normal birth in the hospital. Sadly,
although there is nothing that can be done for a trisomy 18
baby, before the baby was very old the hospital staff had
figured out a reason why it had to be separated from the
mother. The baby didn't live very long and the mother wanted
it there with her, but someone just felt they had to do
something, even if it was only to take the baby to the
nursery "where we can watch it." Why? To me, home would be
the perfect place for this baby to be born so the parents
can come to terms with the situation in privacy.
-Marion Toepke McLean
Reprinted from Midwifery Today E-News (Vol 2 Issue 25 June 21, 2000)
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