Emily's Story
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Family and Friends

They're going to be your biggest support. In my case, I kept my sanity because of them. At the best of times they're your community, and at the worst of times they'll hurt you worse than any stranger could. It's not easy for you, but it's also not easy for the people who know you.


They're probably the first people you phoned after getting the news. In a way, I think it's as terrible a blow to the baby's grandparents as it is to the parents. They're not immediately in the situation, but they had their own dreams and hopes for your child. Even when you can't cry, you can count on the grandparents to cry for your baby. They will feel the same strain on "breaking the news" to their friends. They might end up in the middle if you need them to spread word through the rest of the family because yourself can't. At the same time, because your parents know you and don't keep their "guard" up around you, you may find your parents say the most hurtful things of anyone. I know of several individuals whose own mothers said by far the cruelest words about the situation. I think whatever your relationship to your parents and step-parents is before the diagnosis, you can multiply it by ten and you'll know how the relationship will be afterward. All I mean by that is that during crisis, people tend to dig in and react the way they always have reacted.

Your parents, step-parents, or foster-parents will go through the same grief stages you do. They might blame themselves (as if they chose the genes they passed down). They might blame you. They might get depressed, go into shock, and so on. On top of that, most grandparents have seemed to want to step in and take the pain away. They can't, of course. But they might try. Theirs is a dual pain: they hurt for their child and their grandchild at the same time. If children represent the future, I think grandchildren may do that even moreso.

I wasn't as thorough as I could have been with my parents. It never occurred to me that I ought to be passing along all the information I got at the time I got it. My mother conducted her own internet search and came across much of the same information I did (including the same shock photographs); my father waited about a month and then did the same, but he seemed to avoid the terrible photos. He was very upset afterward, though, and I didn't know how to comfort him. I should have prepared him for the stories he would find online. My parents-in-law didn't do any kind of internet search, and it's my fault that they didn't have as good a grasp of anencephaly and what it would mean. They had never seen a photograph of an anencephalic, and while I don't agree with Dr. Tactless that "these babies look pretty hideous," their appearance can be a bit shocking.

I did keep everyone updated, though. After every midwife visit, I would send an email to my husband at work, one of my closest friends, my parents, and my father-in-law. This helped them go through the ups and downs with us. While I might not have done very well in other respects, I think the "midwife reports" were a good idea for my family.

Your Siblings

This might be a tricker strait to navigate. My husband comes from a rather large family (by today's standards) and of all his siblings, only one ever phoned us after we got the diagnosis. My brother called nearly every week, though, and he and I, while we get along, aren't necessarily close. His calls helped me a lot. Because we grew up together in the same family, he understands my sense of humor. He was forthright that he had no idea what to say and was afraid of saying the wrong thing. But then he never did say the "wrong" thing after all.

I know other sibling relationships are more contentious. Because you and your sibs are probably in the same stage of life, your siblings may be having babies of their own. They may feel jealous that your baby is getting all the attention (whileyou feel jealous of theirs). They may feel as though their baby is somehow endangered because you happened to lose the genetic lottery with your baby; it's bizarre, but because your having a baby with a birth defect points to a higher risk for them, they may actually blame you. They may feel increased pressure because they feel their own children have to "make up" for the loss of yours in the grandparents' eyes.

Because I didn't experience any kind of sibling infighting, I really have no clue how that could be resolved. When this issue arose in one of my support groups, though, the other women recommended writing a letter to sort through the issues. I would add to that my $.02: just because you write the letter doesn't mean you need to mail it.

Your Other Children

Our son was with us when we went to the ultrasound. He knew something was wrong, but he stayed very still and quiet until we were upstairs in the doctor's office. Finally I explained to him that the new baby was sick. My husband gets top honors for what he said next: "We are very glad because we have you, but we are sad because the new baby is sick." Our son never felt jealous of Emily, and I think my husband's gentle reassurance is the reason why.

Because we had four months, we took things slowly. We bought books that dealt gently with the concept of death. The best of those was Nana Upstairs, Nana Downstairs by Tomie DePaola (but see the resources page for other books). We explained to him that the new baby had a "broken head". We took the advice of those who had been before us (mostly the Abiding Hearts and ASF websites) and said that Emily did not have all her parts. We reassured our son that he and we had all been born with all our parts. We think he put it together on his own before we explained that the new baby would die because she had a broken head. He wanted to see a picture of a baby with a broken head. Any time he saw a baby--at the grocery store, in church, at playgroup--he would ask if that baby had a "broken head" or a "fine head".

Our son was able to bond with his sister, and I think he benefitted from that. He had a real connection to her. When he saw me writing in my journal, he wanted to write Emily a letter too. He wanted me to write his name in sidewalk chalk, and then he wanted me to write hers. He came to all my prenatal visits with me. He would listen to her heartbeat on our home heartbeat machine, and one day I caught him in my bedroom with the machine on his stomach, "listening to the heartbeat." Once he gave my tummy a kiss. When he saw her in the hospital, there was no fear. We offered him the opportunity to hold his sister but didn't press him. He decided he wanted to, and he had the sweetest smile as he looked at her. When he was done, he exclaimed, "I...hold Emily!" He was thrilled. After she died, we let him say goodbye, and he still has a connection to her. It makes it easier for him to understand why I am sad, why we visit the cemetery, why we have all her photographs. Nowadays he reassures me that "we will have another baby, and it will not have a broken head," and "if we have another sick baby, I will hold it."

We brought a babysitter to Emily's funeral so that if my son needed to leave, he could. He was great, though. He didn't stay for the graveside service, and that was fine too. He knew how much he could handle, and we let him participate as much as he could.

One night he said to me, "She lost a baby. She had cephaly." Oh yes, little kids listen all the time. That would be why I would urge anyone who wasn't sure, tell your child everything. You'll be the best judge of how much your child is capable of handling at any given time, and on what level you need to explain things. It will be easier for your child if you don't hide things. Even a simple explanation is better than none at all.


There are two categories of friends: old friends and new friends. The new ones are the friends you made since the diagnosis, networking through other infant-loss support groups. They'll mostly understand what you need, having been there. The old friends are more problematic.

One of my friends commented that the women on one of my support groups were very mercurical. They got mad if their friends didn't say anything, and they got mad if their friends said the wrong thing. Thinking about it, she's right. (She's a special category of friend, by the way--she went through this entire ordeal at my side and is lurking on one of my online groups so she can understand more of what I'm experiencing. She's one in a million.)

Our friends are bound to say or do something that hurts us. Not because they're being hurtful, but because the whole situation is painful. I think we have a tendency to lash out when hurt: "You said something insensitive!" Not necessarily. One of my friends delivered a baby four weeks after Emily died. The rest of our playgroup was going to have a baby shower for her, and I said that I would buy a gift and drop it off in advance but I wouldn't attend. They were very understanding of this. But they sent me an invitation anyhow. I opened this in the mail and was totally furious: how dare they! I already said I wasn't going! But my husband and the above-mentioned good friend said, you'd have gotten mad if those folks hadn't sent you an invitation because you'd have said they were acting like you can't handle it. And the thing that galls me husband and friend are both right! I imagine the baby-shower folks debated whether to send me an invite: should we make her feel excluded by not letting her even know we're having it, or should we make her feel excluded by reminding her that this woman has a baby and she doesn't?

I have to ask myself, do I really want my friends walking on eggshells? No matter what they did, that situation was going to hurt me.

I find I don't want anyone to avoid talking about babies in front of me. They have babies; they want to talk about them; when they cut themselves short, I feel hurt. But then when they talk about babies in front of me, I feel hurt because my baby is dead. I find myself in the situation of wanting everyone around me not to want to talk about their babies. Who's being unreasonable? I finally decided, not them.

Several times I've caught myself wanting to cut off all contact with all my friends. [As I'm writing this, I'm still reeling from how a friend of three years turned her face away from me as she walked past this morning. Trust me, it's hard not to call her right now and tell her to go to hell.] But here I've had to trust my judgment in clearer-headed times: if they were good friends before, they're probably still good friends now. The biggest issue I've had is to figure out which problems are theirs and which are mine. When I mention Emily and they get a sudden look of horror, that's their problem. If they can't return my wave and feel the need to avert their eyes, it certainly isn't my problem. When they send me an invitation to a baby shower and I'm filled with rage, that's my own problem. I try to treat both situations with a generous dose of good humor.


Don't laugh--pets are an important part of many families. When I came home just after getting the diagnosis, my cat knew something was up. I promise, I'm not joking. Maybe humans in a state of chaos give off a pheromone that cats can detect. Whatever the reason, my cat Hazel met me at the garage door and didn't leave my side for the rest of the night. She's usually pretty aloof. For weeks afterward, when I laid down during the day, she'd join me on the bed. She probably didn't understand what was happening, but she knew I needed love from someone.

I've heard other people involve their pets in a different way: the pet becomes a stand-in for the infant. Cats are usually around the right size to pick up and rock (excluding for the moment my 19-pounder) and although you'll get the Dirty Look Of A Lifetime, you can even test out your baby-sling with your cat. Others have told me their dogs became their constant companions, and I know two people who got a dog as their "new baby." If you find yourself longing for an animal companion and you think the state of flux in your family won't affect the care you can give a new pet, it might be something to think about. People with pets are generally healthier and less stressed anyhow--and nothing will ever beat neonatal loss in the high-stress department.

For the contrasting opinion, I've received this feedback: "Getting a new pet might be a bad idea if after things calm down, the new pet-owners find they really don't want a litter box in the house, or to have to walk the dog every day." I agree with this--pets deserve a certain level of care and emotional investment. You'll know your own temperament best and whether you're likely to change your mind.

Above is Hazel with my firstborn. I love how they're sleeping in mirror image. That's the last of the cutesy pictures, I promise.


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