Things Your Baby Needs
Anencephaly is a very straightforward birth defect. We didn't
have to decide whether to have Emily put on life support or to
attempt invasive life saving surgeries. I know of other syndromes
like this. Some parents, however, have to decide whether to take
extreme measures in the hope that they might save their child's
life. I have no answers, except that I'm not sure there is ever
a moral obligation to take extraordinary measures. Because there
are no clear-cut answers, though, it's vital that the parents
and the doctors discuss their options and make the decision ahead
of time. The hospital, maternity unit, and pediatric unit can
all be prepared in advance. In addition, because afterward you're
likely to second-guess your decision, it's better to know you
made the decision in a calm state of mind after being fully informed.
Feeding isn't an extreme measure, but I've heard of hospitals
withholding food from terminally ill infants. Discuss this in
advance, and decide whether you want a feeding tube.
Leave your decisions open-ended; unexpected situations or
new information may arise which would change your mind. It's
better to have a starting ground to go from if that happens,
and at any rate, you'll be able to compromise better if each
parent knows why the other parent wanted what he or she wanted.
Some parents may have to make the decision about organ donation.
This too is better discussed far in advance of actual need. Because
some methods of removing the organs may be ethically controversial,
find out how the organ donation will be performed, which organs
may be donated, and what criteria your doctor will use to determine
that your baby is a suitable donor.
Buy at least three outfits for your baby. Two are for the
hospital. Even if you decide not to dress the baby in either
one, you will still treasure them afterward because they belonged
to your baby. The third will be for the burial. In addition,
because Emily's anencephaly would profoundly effect her head,
I bought some hats. Anencephalics will need very small hats.
What you choose should be determined by you and not by your
friends. My friends tried to push me into buying a frilly pink
dress. I hate pink. I don't normally wear dresses. I'm not a
frills person. My daughter probably would take after me in at
least some of these respects. I also know that her brother was
born very dark and blotchy-skinned, and pink wouldn't look good
against that complexion. So I bought red outfits, and I was very
pleased with this decision. Whatever clothes you decide on, make
sure you're happy too.
If there is a chance your child will live long enough to travel
home, you'll need a car seat. Have one at the ready, either one
from an older sibling or ready to borrow. If you want to buy
one, safety experts recommend you buy it new. Car seats are generally
marked with a discard-by date, but they'll serve long enough
for any possible future children to use them (if this is a consideration.)
I had bought my son a stuffed
animal, and I ordered the same one for my daughter in a different
color. (If you're curious, it's a Gund Snuffles, and I bought
it from Agape Bears.
I heartily recommend their service.) I intended to bury Emily
with the bear, and I brought it with us to the hospital. The
bear was much bigger than I expected because I guessed the wrong
size, but it turned out to be just the right size for me to cradle
throughout labor and after Emily died--there's something maternal
about needing to have something in your arms. I found myself
kissing it on the nose frequently. I miss that bear now, and
I wish I had bought two of them. Luckily, one of my relatives
had bought Emily a different stuffed animal, and I have that
to cuddle when I feel lonely for her. I recommend buying two
stuffed animals for this reason. The Gund Snuffles comes in different
sizes, so if you've got a poetic streak, you can buy a smaller
one for your baby and a larger one for yourself; you and your
bear can be bereaved together afterward.
We bought Emily a Mizpah coin, the kind that's in two pieces
on two separate chains. It says, "May the Lord watch between
me and thee while we are apart from one another." I've seen
other means of doing the same thing: hearts split in half or
nested hearts. I wanted one in three pieces (one for each parent
and one to be buried with her) but couldn't find it--even on
web sites specifically selling these necklaces for babies who
had died! Am I the only one who thought the father would also
like a keepsake? We buried one half with her, and the other half
is in her memory box. You can find one from $25 to $215 at Leaflet
Missal Company or any department store with a jewelry counter
(Sears and WalMart both have them.)
You can buy these in any craft store; we got ours in the craft
section of Wal-Mart. There are kits that you use to mix an imprint
material, and once that hardens, pour plaster over it and dry
it. What you have in the end is a three-dimensional imprint of
your child's hands or feet. We bought two, one for hands and
one for feet. If I could do it over again, I would have bought
three: one to test-run beforehand. I also would have brought
a measuring cup to the hospital to measure out six ounces of
water for the imprint material. (We poured the plaster at home,
which also wasn't the best idea of the century.) We took two
molds of the feet because the first didn't come out very well.
I'm glad we have the imprints, although initially I was squeamish.
As with photographs and video, if you do it and don't like it,
you can discard it later, but you'll only have one chance to
A friend who was herself carrying an anencephalic baby was
kind enough to crochet a tiny cap and a baby blanket for Emily.
We opted not to bury it with her, but rather took it to the hospital
with us and have saved it here. It's good to have something soft
that belonged to Emily.
Wearing Emily's baby sling before her birth was like putting
on a hug. While it's a bit expensive, I justified the cost because
it would also work for other babies we might have. The biggest
advantage of a baby sling is that you can wear your baby all
day long, even to nurse, and the baby will always be close to
you and able to hear your heartbeat. I know that if Emily had
lived for several days, I never would have put her down.
On a more prosaic note, should your baby be one of the rare
few who live for months, you can put him or her in the sling
when you go out. Two benefits: firstly, if your baby requires
oxygen, the tank will fit into the sling with him; and secondly,
the sling will effectively "hide" your baby from the
world. A normal-size sling swallows up a tiny baby. This was
important to me, since Emily's condition is a very obvious one
and might turn more than few faces white. If you've had a baby
before, you know there's no surer way than a newborn to get people
to walk right up to you and take a good look (even walking naked
through the shopping mall wouldn't beat it, though I can't offer
proof for this!) You may want to spare yourself the pain of shocked
There are very good slings available through Mayawrap,
and I highly recommend them. The "tail" can be be flared
out to cover your baby entirely while nursing. (I've also playfully
whapped people with the tail to keep them at a distance, and
Some conditions leave a baby unable to nurse in the conventional
way. I've heard that the Haberman Feeder is very effective in
helping babies with neural tube defects or cleft palate. I'm
not sure if it's useful with other conditions. It's expensive,
but in my mind it was a worthy precaution even though we never
used ours; afterward we donated it to a crisis pregnancy center.
We bought ours from Family
A Place To Put It All
You may want to make a memory box. I started out with all
Emily's things in a sewing box that was pretty enough to put
out on display if I chose to do so. I've since acquired a nicer
jewelry-box (minus the tray) as a memory box, but I use both.
Others use a small cedar chest.
You'll notice what I didn't mention...
A crib. Here's my opinion, and it's only an opinion, but if
you have a limited time with your child, why use a mother-substitute?
You can put your child into your own bed to sleep. Unless you
frequently fall out of bed or are heavily medicated, you won't
roll over on him. When moments with one another are so limited,
it seems silly to waste eight hours out of every 24 in separate
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