Dear all:

I am reticent to keep posting, but I felt that my personal experience with an anencephalic newborn
could possibly encourage you in your practices.

I was diagnosed at ten weeks with a little girl with classic anencephaly.  We decided to continue
the pregnancy and prayed and hoped that she would be born alive, as we wanted to tell her that we
loved her, that we were sorry she had this condition, and to let her die in the arms of people who
loved her.  At this time we had only heard of one anencephalic infant who lived only 4 minutes and
never breathed alone.  We expected the same thing for our daughter.

Much to our surprise, though, she was not only born alive but very healthy and pink..we kept waiting
for her to slip away but she kept breathing and looking wonderful.  We bathed her, and dressed her,
and still kept waiting for her to begin gasping and dying, but she just kept breathing like any
other baby.

At two hours postpartum, she began smacking her lips and making sucking motions.  We had not thought
about needing to feed her, but gently my LC asked me if I wanted to try, saying, "She's acting like
she's hungry.".  I eagerly latched her, and she attached with a strong latch and breastfed for 20
minutes, with a very respectable suck.  She nursed the other side, then seemed to rest.  She
repeated this pattern for the next two or three days...sucking her lips and acting hungry every two
hours.  After the third day, she seemed too weary to effectively suck, so we used the Haberman
feeder and some expressed milk from a dear friend.  (I have all this on video, if anyone ever needs
it).

After her fourth day, she spiked a fever and we knew she had become infected with something.  Her
breathing became very labored and we could tell that she was no longer needing food, or was able to
utilize it.  It seemed that feeding her stressed her system, as she became cyanotic right after a
feeding.  She had been taking about 20cc's per feeding when she was well, but couldn't even take 2-3
cc's any more.  It became obvious that she was dying and didn't need nutrition any more.  We did
drip glucose water in her mouth a little (whether for her or for us I am not sure).  On the fifth
day, she died in our arms.

There are a few things I would like to conclude with you.  Firstly, one of the things that I grieved
over upon learning of her diagnosis was that I would not get to nurse her.  All I could imagine was
standing over her grave, full of milk, and no baby to give it to.  It was a very heartbreaking
thought.  So, to be able to experience that with her even a few times was a remarkable gift to me.

Secondly, it was the gentle encouragement of my LC that helped me to think of her needing to feed.
We had been expecting her to be so compromised that we never thought of feeding needs.  It was such
a blessing to be surrounded with people who thought she was deserving of love and nurturing, and my
special LC who helped me to give it to her.

Thirdly, even the Haberman helped us to think of her as normal in some ways.  When you have a baby
with such a severe problem, it is so easy to only think of the baby's diagnosis (i.e., what is WRONG
with this baby) instead of what is RIGHT with the baby.  As I look back on this time with her, it is
the normal things we did that give me so many fond memories.

Lastly, I also pumped down, it took about a month.  It was a very sad time, I felt as if my whole
body was weeping. However, I was so glad for the gentle treatment instead of the abrupt engorgement
(esp. now reading about sagging!).  I highly recommend this if the mom seems interested.

I could not have done this without the help of my wonderful midwife/LC.  What a wonderful gift she
gave me.

Warmly,

Anne Andis

We have a web site designed to encourage people who decided to continue a pregnancy with an
anencephalic pregnancy.  The URL is: www.asfhelp.com
Maybe this will be helpful is you ever come across this.