A selfish act or not? "Baby Faith never left the hospital."

[SoCalDem]

http://news.google.com/news?hl=en&lr=&q=lived%2046%20minutes%20creamer&btnG=Search&sa=N&tab=wn

selfish for making the child be born..not selfish regarding the photographer.. That's a nice gesture, and some hospitals do this for parents who lose a child.. I saw a story once about a lady who does this, and she collects the things the baby used in the hospital and boxes them up nicely..and mails them to a family member so that when the family is ready, they can be returned to them..



Anita Creamer: A gift to cherish

Baby Faith never left the hospital. But Tamara Scott's photographs give grieving parents a life to remember

By Anita Creamer -- Bee Columnist

Published 12:01 am PDT Friday, September 1, 2006
Story appeared in Scene section, Page J1

Faith Anne Van Steyn was born three weeks early, at 4:59 a.m. on Aug. 8. She lived for only 46 minutes. Yet every moment of her life -- every breath, almost -- was carefully documented. And every moment of her life, she was beloved.

"She was so sweet," says her mother, Jackie Van Steyn. "She was beautiful, and we loved her."

This is a story about love and loss and, most of all, choice -- the choice to carry a child to term even though doctors said she had no chance of surviving; and the choice to cherish her memory through pictures taken by a volunteer photographer.

snip

[LaurenG]

1. I'd say it would be the choice of the parents

I can't judge whether it's selfish, after all doctors are sometimes mistaken. How very heartbreaking as it appears she was a very wanted child.

[uppityperson]

2. link needs log in, found a bit more info elsewhere. Tragic.

http://72.14.203.104/search?q=cache:12uhb67LUYcJ:www.livingwithtrisomy13.org/albumFaithAnn.htm+%22Faith+Anne+Van+Steyn%22&hl=en&gl=us&ct=clnk&cd=1&client=firefox-a
My name is Jackie Van Steyn and my husband is Mike, we live in Elk Grove, CA. Our daughter’s name is Faith Anne and is due August 27th, 2006. We found out at 22 weeks in a level II ultrasound that our daughter has holoprosencephaly. There is the presence of a proboscis and they say she has cyclopia and were told termination was the only option. We along with many others prayed as to what to do next. At 24 weeks we had an appointment with the genetic counselor and had the amniocenteses done and that is when they confirmed Trisomy 13. My pastor advised us that God would put in our hearts the right thing to do and that no matter our decision God is a loving and forgiving God. So we prayed for many hours….days…we finally made the decision to carry our baby girl as long as God allows. I found an online support group for holoprosencephaly and was given an incredible amount of support, love and prayers. There is where I came across the scripture:

"For you created my inmost being; you knit me together in my mother's womb. 14 I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well. 15 My frame was not hidden from you when I was made in the secret place. When I was woven together in the depths of the earth, 16 your eyes saw my unformed body. All the days ordained for me were written in your book before one of them came to be." Psalm 139:13-16

That is when I knew for sure that she was exactly as God created and intended her to be and who was I to decide if her life is worth living as her mother…let alone doctors who were complete strangers to us. We are now about 32 weeks along and loving everyday we have with her. I have contacted the “Now I Lay Me Down To Sleep” organization and the photographer here in Sacramento has been a true gift to us. She has been out to our house and took maternity and family shots of us with our little girl in the womb alive, kicking and beautiful. Faith is our first child together as I have a 13 year old son from a previous marriage. Our photographer was able to capture the love and excitement we have for our baby girl in photos we will forever cherish, she will also be in the delivery room with us. We have been assigned an equally gifted hospice nurse who has been caring, encouraging and supportive in not only the prognosis of death but supportive in helping plan for Faith to live. At the holoprosencephaly support group I made contact with a woman in another state who was four weeks further along than I, also with a baby girl diagnosed with the cyclopia. Her baby girl has since delivered at 33 weeks, they were able to spend precious moments meeting their daughter face to face and handing her to Jesus together and to say goodbye. They don’t for a minute regret their decision to carry her as long as God allowed. Heaven has never been more real to them than it is now. With so much support from family, friends and the blessings of so many that God has brought in our path, I know more than ever that God is holding us up every step of the way. Thank you for this website and the lovely pictures and encouraging stories of HOPE and FAITH. I have another appointment July 7th and pray a prayer of blessing each new day we have with her. I will pray for all of the unborn babies being lifted up to God’s will and healing touch.

May God Bless,

Jackie Van Steyn

[Hekate]

7. Their pastor was a compassionate man to this couple

"My pastor advised us that God would put in our hearts the right thing to do and that no matter our decision God is a loving and forgiving God."

His compassion for the Van Steyns' pain is a refutation of the fanaticism that claims every fetus must be carried to its term no matter what. This is the essence of "choice" in its religious context -- and, although many clerics might shy away from the label "pro-choice" because of the sound and fury of fanatics, religous leaders minister to the people in front of them.

I'm not saying this very well, but that one sentence brought a lump to my throat. No one would ever want to walk in this woman's shoes, and I can't judge her decision.

Hekate

[never_get_over_it]

13. We can not judge

it is not clear to me that the child physically suffered more for having lived the 46 minutes than had the pregnancy be terminated - that would certainly enter into any decision that I would make - but as a woman without any children who had a miscarrage I can tell you I would have given anything to spend 46 minutes with my baby.

[cornermouse]

3. Their choice is not the choice that everyone would make

and it should be noted that their choice should not become the "choice" that everyone is forced to take.

[BurgherHoldtheLies]

4. Succinct and to the point. Well said. (nt)

[LostInAnomie]

5. I would say it is the choice of the parents.

As an outside observer I can only really comment on what I would do if it were to hypothetically happen to me and a future spouse. I would probably feel selfish bringing a baby into the world knowing that it was going to die an uncomfortable death. I would think about who actually benefits from the child being brought into the world. Does the child? No, it is going to die anyway, and it could be done in less painful ways. Do the parents? Not really. Sure they get to see the baby and avoid the tough decision, but the loss is still the same.

Of course, I have never been in the situation and can not say for sure what I would have done.

[Lenore]

6. I can't access the story...

I am not registered user of that news site.

What is the "selfish act" you are wondering about? If it is about the parents having someone document the life and death of their child, I don't believe that is selfish at all.

It may not be the nicest job in the word, that's for sure. In fact, some volunteer photographers who donate their time and services to do this have reported how emotionally traumatic and anguishing it can be, for the photographer, to have to enter the scene after a baby's death, or as they are dying.. to pose and somehow try to create photographs that can help the parents remember their baby long after the body is buried.

Often, due to unusual bruising and/or discolorations, the pictures need to be done in black and white.

A parent of a dead baby has as much of a right to have tasteful images of their baby as the parent of a living child. They probably need it even more.

[SoCalDem]

8. I mis-stated that.. Selfish meant in making that child be born

only to die, less than an hour later....sorry I was not clearer..

[uppityperson]

9. and knowing that the child would be born with serious defects/die immediat

knowing that the child would be born with serious defects and die right away. Is this selfish or not? I cannot pass judgement on them, can only say what I would chose, and hope that either choice remains a choice. Tragic either way.

[Lenore]

12. Thanks for the clarification...

When I was pregnant with my youngest son, I was told that the "triple test" showed he probably had Trisomy 18 otherwise known as Edwards Syndrome. Edwards syndrome is normally incompatible with life and a majority of the babies die in the womb. Of those that do live long enough to be born, death often comes within days if not hours. On very rare cases Edwards syndrome babies may live a year or two but almost always with severe deformities and mental retardation.

We found this out on a Friday, with Monday being a holiday just like this weekend. I couldn't get further testing until Tuesday which gave me lots of time to first mourn and then research.

By the time of the tests on Tuesday we had decided that we would carry the baby to term. We ended up rejecting the amnio (because of the slight chance of miscarriage) because my husband and I were sure that IF our baby had Edwards, it would show up on the ultrasound (the anomalies are extreme and easy to detect once you know what you're looking for). After the normal ultra sound and the rejected amino the rest of the pregnancy was spent wondering if our son would be OK or not. I felt pretty certain he was but just in case we did consult our attorney and made provisions for his immediate discharge from the hospital, if he had Trisomy 18, there really is little help for such afflicted babies so why torture them with tubes and drastic "life saving" treatment that simply prolongs death??

Our boy was born healthy and un afflicted :-) I don't feel I was "selfish" for deciding to carry him to term even if the evidence had continued to point to a disability non compatible with life. It was my choice, my body, my baby, my sorrow and ultimately my joy.

In times of uncertainty and crisis (such as we went through and the poor family in this article) let us not be selfish and impose our morals and medical judgments upon these families already suffering so much. Mostly they need compassion and support, regardless of which way they arrive at their babies death (or LIFE in our case).

[never_get_over_it]

16. I'm sorry you had such a hard time

but very glad for your happy ending. I mentioned in an earlier post that I had a miscarriage, which isn't completely accurate. I went to a Dr's appointment and there was no heart beat - and was advised to have a D&C - I made them do the ultasound twice and then almost didn't have the D&C just in case they were wrong. What made me finally decide to go ahead is the hope I would be able to get pregnant again which unfortunately never happened...but I can tell you I have had many thoughts over the years wondering if I did the right thing - I mostly think I did but.....

[SoCalDem]

10. This link might work

http://news.google.com/news?hl=en&lr=&q=lived%2046%20minutes%20creamer&btnG=Search&sa=N&tab=wn

[melnjones]

11. I think it's a beautiful story. nt

[Arkansas Granny]

14. I don't think selfish is the word I would use here. This couple

was faced with a heartbreaking decision and this was the choice that they made and it must be respected as such. It may not have been the choice that you or I would have made, but I think few people really know how they would react to a situation such as this until they are faced with it themselves.

[FlavaKreemSnak]

15. I think only a medical expert has the answer to if it is selfish

For instance if the baby is going to be in pain, yes it is selfish no matter what the beliefs are. But if the baby isn't going to be in pain, or if they can keep it from feeling pain and the parents want to have it for a little while even if it seems psychologically weird and maybe not a good thing to you or me, maybe they have different psychology and beliefs.

I mean, to some people it would be sadder to have that little while with a baby they knew would die, but to other people it might be sadder to have zero time.

But the thing that should decide is not really how the parents will feel either way, until the doctors can say whether the baby will be in pain if it is born.