Monday, March 12, 2007

Perinatal hospices: Helping parents cope with the passing of their newborns

When you decide to have a child, especially your first one, the last thing on your mind is the ways in which it can all go so horribly wrong.

You think you'll get pregnant, you'll have the baby, you plan your doctor's visits, you schedule childbirth classes, you pick a hospital and eventually you pick names. When you do get pregnant, and you see the first ultrasound, the fact that there is a new person in your lives slowly starts sinking in and you dream about family pictures with three people instead of two.

You approach each doctor's visit with anticipation. You read up on what to expect each day of your pregnancy, eagerly flipping through the pages, skipping ahead to see how the baby will look when he or she is born. You go through one test after another - the HIV test, the chromosomal abnormality test, the sugar levels test. You wait for the all-important twentieth-week ultrasound. You count ten perfect toes and ten perfect fingers and see the rise of that tiny nose and the curve of the lip, the beating heart, the bulging stomach, the bent knee, the beautiful spine, the rounded head.

Having gone this far twice and having experienced some of the catastrophic events that can visit pregnancies two other times, I count myself incredibly lucky for the countless small miracles that have come my way. But for many people, these miracles are still the stuff of dreams whereas the catastrophes are all too real.

This story in today's New York Times about perinatal hospices is a heart-rending tale of young parents facing the death of their newborn babies.

Perinatal hospices guide parents through how to deal with a pregnancy once the parents find out that it will end with a stillborn child or a newborn that may survive only a few hours or days, but decide to continue the pregnancy. The hospices also help the parents deal with family and friends who may not know how to react to the news.

During the pregnancy, doctors had told James and Jill Kilibarda that their baby ... would probably end her life within hours of birth.


Hospice workers encouraged the Kilibardas to make memories with Alaina. So while parents of healthy newborns might avoid crowds or other situations where their children might get sick, the Kilibardas have taken their daughter to their favorite coffee shop, the houses of friends and big family get-togethers. They want to know, they said, that she was once in places that mean something to them, like the cold forests of northern Minnesota where Mr. Kilibarda grew up and where they recently took her.


Chakra said...


Anonymous said...

gosh, this is heart-wrenching. i have been through the loss of a baby (though much earlier in the pregnancy) and that was so hard. I can't even imagine what it must be like for parents to have been through a complete pregnancy and then to lose the child. how very sad. glad to see there is some support out there.

Anonymous said...

You write so well...have you thought of publishing a should seriously try it...

DesiGirl said...

oh my god! i cannot even envisage such a thing. *shudder*

Sujatha Bagal said...

Chakra, anjali, DG, agree. Under the circumstances parents could use a hand, and I'm glad there is someone. Many times our families and friends are grieving with us and it is better that the helping hand is someone detached and professional.

Anon, thanks for the nice thought. :)

Anonymous said...

My Sis-in-law lost two babies ( at weeks 22, 26)and I wish there was something to help her cope with it. As it is she has to deal with insensitive remarks from well meaning family.

Touching article.


Sujatha Bagal said...

Sunita, the very best wishes to your sister-in-law. It must be very rough. Seems like the pregnancies were somewhat advanced.

Anonymous said...

Sujatha, I can relate to this. In the summer of 1984 I gave birth to a still born baby boy at 36 weeks. One day he just stopped moving, the ultrasound revealed no heartbeat. My obgyn suggested I could deliver this baby vaginally as that would enable me to avoid a c-section in case I had another [I already had one child by c-section. I was very numb and all I got by way of advise from family members [female] was to go with the Dr's suggestion. 13 days later, after 20+ hours of labour I delivered my baby. The obgyn refused to show him to me. Her theory was that I would not be able to bear it. He was taken away to be buried by my greiving husband. I was mostly in a state of prolongued shock and barely voiced any opinion on anything. 2 years later, the same thing happened, this time with a baby girl. Again, I was not allowed to hold my baby, or even look at her. The personal hell we went thru is something I cannot forget, but have struggled to put behind me. I did have a baby after that, but only becasue I wanted a companion for my older child who I once overheard telling the maid "mama has a baby, then the baby dies and mama comes home again". Until he came along I had recurring nightmares of the most dreadful kind.
I will not go into the medical details of my mishaps. I consider myself the mom of all four and will love them forever, the ones who are with me and the ones who are waiting for me on the other side.
Years later, after I had lived in the west and seen the "Empty Cradle" type support groups, I came back to India and visited my obgyn. I asked her why she had not let me see or hold my babies and grieve. She said it was not done in India, because people could not bear it. I discussed the issue threadbare with her and she finally agreed to give parents the option of spending some time with their still-born baby if they so wished. I have not followed up.
As a mom who will always miss her little ones who never got a single hug [altho their dad held them all the way to the graveyard] and whose little bodies were buried under mounds of earth, I have known the pain of this for 23 years, twice over. I think every parent should be counselled on spending some time before letting go, altho one never really does.
I am grateful for the two who filled my arms and life with joy and laughter and have no anger against fate that denied me the other two, but I am still enraged at the system that denied me my rights as a mother and the female relatives who spent more time telling me how I would "have another, don't worry, forget it" etc. Under the garb of "kindness" lies the cruelty of it all.

Sujatha Bagal said...

Dear Mom of Four, thank you so much for sharing your story and I am very sorry for the losses you have suffered.

You raise a very important point regarding the kind of support family members can provide in similar situations. If you don't mind, perhaps you could tell us what you would have found helpful during the crises you suffered.

And it's awesome that you went to the doctor and discussed what was bothering you. I do hope she's taken your suggestions to heart and other mothers have not gone through what you did.

Take care.