Emily's Story
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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.

Car Seat

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.)

Stuffed Animals

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.

Mizpah Coin

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.)

Plaster Molds

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 get it.

Baby Blanket

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.

Baby Sling

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 faces.

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 it works.)


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 Support Services.

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 rooms.


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