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
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.
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
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
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
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
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 is...my 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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