Deseret News | When A Birth Is Also A Death

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When A Birth Is Also A Death

Sharon in Tennessee | 5:58 a.m. March 1, 2008

Sometimes in mortality, (since I have an irrevocable living testimony / experience that there IS AN AFTERlife.....(I can see and hear them in joyous family gettogethers)....sometimes there are lessons and experiences and tests we CAN ONLY LEARN from our hearts being wrenched, torn and broken.....ONLY from that deep hurting....ONLY from being pushed to our limit of faith and belief.
God, and I KNOW HE exists and loves us, has only divine and loving reasons for those experiences to exist. When we TRUST Him and accept His will....LETTING GO....Letting God....the parts of us that need refining and changing can do it's work.
We WILL be with our families again. Please believe.
Love to everyone whose heart is aching. Your children live and wait for you in the Spirit World.
All you are going through, or have done in the past
is for a glorious blessed purpose. TRUST God please.

Michele | 6:05 a.m. March 1, 2008

What a wonderful story!

L. G. KIRKPATRICK | 6:45 a.m. March 1, 2008

AND I THOUGHT THAT I HAD PROBLEMS!

My heart goes out to these parents, and to the babies. God bless each and every one of you.

Comments continue below

Parent of an HLHS Child | 6:53 a.m. March 1, 2008

I am the parent of a child with Hypoplastic Left Heart Syndrome (HLHS), a condition mentioned in this article.

I would like to make it clear that HLHS can be treated and is not always "incompatible with life."

My son has had two of three surgeries that were developed over the past 25 years by Dr William Norwood and his colleagues in Boston and Philadelphia.

My son is 8 months old and doing great. He will always have to be monitored by a cardiologist and might eventually be a candidate for a donor heart, but there are hundreds of children with HLHS who have been successfully treated. One of the older treated HLHS survivors is in her mid 20s and studying at college.

Any doctor or journalist claiming that HLHS is incompatible with life is not up to date.

Within the past ten years, some medical materials still claim that it is a fatal condition but this is inaccurate.

Some parents still choose compassionate care for a number of reasons, but lack of possible treatment should not be one of the reasons.

It is easy to look up HLHS online and a number of resources exist including hopeforHLHS dot com.

Cristie | 7:05 a.m. March 1, 2008

This was indeed an uplifting and inspiring story. Thank you so much for sharing it.

Susan | 7:34 a.m. March 1, 2008

What a wonderful outlook on what life really is. Although very hard and heartbreaking, adding those memories to your family is a great way to celebrate what that life is. I wonder if maybe making a scrapbook of all of the memories will keep it in their hearts and pass it on to future generations?
Kudos to Angel Watch for the wonderful work they are doing.

Anonymous | 7:58 a.m. March 1, 2008

What a beautiful thing these ladies are doing. Fourteen years ago in a SLC OB office I heard the word anencephaly. I thought my world had just ended. Still in shock with no time to think we were walked over to the hospital where I agreed and was immediately hooked up to have labor induced. About 10 housr into the labor I said "What are we doing, oh my Lord, what have we done". I will never forgive the Dr. who walked me through that process while I was still in shock. I would urge everyone faced with this decision to wait ontil the shock wears off a bit to make this life changing decision. I would give anything to be able to go back and do it over. If I could only hold my baby for a few moments before he died I believe my grieving would have been easier and I wouldn't have anyone to forgive, not even myself. To this family who spent their time bonding with their baby what a beautiful memory you have created for yourselves and your other children.

Debbie | 8:09 a.m. March 1, 2008

Thanks to these two merciful women. The memory of my horrible experience in my full-term stillbirth 28 years ago is still clear when the "whisk baby away" policy was enforced. Nurses showed little compassion during the laboring process, knowing I was delivering a dead baby. Hospital "rules" wouldn't even allow my mother there - never mind that we both had to grieve and my husband couldn't support me in his emotional state. Nurses were annoyed at having to deal with the "dead baby" I had 15 minutes before "got to take baby to morgue." Moments later the clerk called on the intercom, "have you chosen a mortuary yet?" Mortuary? I was still crying. The next day I was aroused by an aide at 5:00 AM to get ready to feed the baby (big oops, no apology).

No photos or commemorative birth certificate for fear that the baby's footprints might one day lead to fraud (a baby we might try to claim on income tax or something else). They cut a corner off the cardstock paper normally used for this , printed the baby's foot and handed it to me - sum total of evidence it actually happened.

This is worrying | 8:32 a.m. March 1, 2008

I certainly respect the intentions here, but it still worries me that these parents and consultants might be causing innocent babies severe and prolonged pain. If these babies are doomed by some catastrophic problem, shouldn't people use a little judgment? Is it merciful to allow a child in or out of the womb to suffer horrendously so the parents can do a little bonding? I'm skittish about euthanasia, too, so I'm not sure what to think about this. It just worries me.

HLHS | 8:34 a.m. March 1, 2008

Hypoplastic Left Heart can be treated and has been for over twenty years.

just-commenting | 8:41 a.m. March 1, 2008

A wonderful story about a difficult situation. It mirrors what I tried to do over the many years as an obstetrician. Those few minutes or hours with a baby that cannot survive are priceless memories - memories that are denied to parents when the baby is whisked away for futile "treatment" in the NICU when there is no chance for survival. Even with severe deformity, the ultrasound enabled me to prepare the parents and I always focused on positive things such as a hand or foot, the tiny body, etc.

I occasionally had to firmly restrain a pediatrician or nursery nurse who was insistent that "protocol" demanded that the infant be taken to the nursery. In these cases, I always gently placed the baby in the arms of the parents for those irreplaceable moments, and then ushered the well-meaning but misguided nursery personnel from the room to have our "discussion" out of earshot of the parents. Without exception, every parent was grateful for the technology that made the diagnosis and time to prepare possible, and for the opportunity to have their time with their child without intrusive and useless interference by "the system".

A Sister, Part 1 | 9:53 a.m. March 1, 2008

When I saw the title of the article, I opened it up and started reading, thinking "I've got to send this to Gifford and Marci!" Then I noticed that Gifford and Marci are in the article. Bless your hearts, you two!

I am Gifford's sister, and I have also had a baby boy born 18 years ago without kidneys, a condition still "incompatible with life". I am one of the unfortunate mothers whose newborn was rushed off to the NICU, so I never really got to see him or touch and hold him while he was alive for 16 hours. I think that what Angel Watch is doing is fantastic; I know it meant a lot to Gifford and Marci.

A Sister, Part 2 | 9:53 a.m. March 1, 2008

As far as the poster above who worries about pain infants might experience, I know in the case of lack of or cystic kidneys, the infant experiences no pain whatsoever; the womb is just as warm and loving (albeit a little tight) as it is for every baby. The baby's death once he/she is born is very peaceful.

God bless all of you who are in this situation; remember that whatever choice you make regarding your infant will be the right one. A wise bishop told Gifford and Marci to make their choice and never look back.

To Sister | 10:11 a.m. March 1, 2008

I've always heard abortion opponents say that fetuses feel pain. So now they don't? Which is it? Is it worth it to those parents to prolong the child's agony just so they can get a footprint on paper? Is the nightmare pain of anencephaly OK as long as you're in the "warm and loving" womb?

Walk in my shoes | 10:47 a.m. March 1, 2008

It is obvious that "to sister" has never actually had this experience. One of the first things that the doctor tells you when they break the bad news to you is that your infant is not experiencing any pain.

Catholic | 10:51 a.m. March 1, 2008

The LDS church officially allows abortions when "the fetus is known by competent medical authority to have serious defects that will not allow the baby to survive beyond birth." (Ensign Nov. 1998 pg 71.) Abortions in such cases kills an innocent child before it's time. purposely killing such a child because it may feel pain or because it is going to die anyway is the primary reasoning of all euthanists. Christians however support the right to life amendment which inists that children in such cases must not be purposely killed. Instead, they should be given every chance to live as long as they can live. Even in the Case of Risk to the Mothers life the child can be removed to save the mother but it cannot be purposely killed in the process and is given every chance to live. Abortions (purposely killing the child)in these cases is only done to ensure that the child does not live which of course violates Christ's teaching to love them as we love ourselves and inasmuch as we have done it unto one of the least of these we have done it unto Christ.

Anonymous | 11:00 a.m. March 1, 2008

Your lead is confusing.

OK walk in my shoes | 11:51 a.m. March 1, 2008

Which is it? I really want to know? One of the big anti-abortion arguments is that "the fetus feels no pain." Pro-life people are always saying that the fetus is capable of feeling pain. Well . . . what's the real story?

Annonymous | 11:58 a.m. March 1, 2008

To Catholic........i dont think the purpose of this article was to make people start attacking other religions. When we believe what has been revealed to us by prophets of God, we CHOOSE to believe,and we can also choose not to believe it.How about we all make an effort to ask God about the matter...because if we ask in sincerity,He will answer.
Its different when you are the one experiencing such a trial and when you have never experienced it.
As painful as it is,we would do well to seek and accept Gods will,and he loves these children(they are His before they are conceived in us).
Let us be supportive rather then critical and insensitive to the feelings of others.

Sometimes they are wrong | 12:16 p.m. March 1, 2008

A very dear friend of mine was told over and over and over to terminate her pregnacy, incompatable of life. Now he is 2 and the medical community was totally wrong.
*Now they aren't always wrong. The "trisomies" they can confirm. There are other birth defects that are abosolute. I think it is a very beautiful, t sacred experience to bring a child even for just a moment into this life.
*However, shame on those flinging the anti abortion stuff too. For some famlies it is not something they feel they can cope with, to go full term with a child that is incomptable with life. Just because the prognosis is that the child will live for a few hours, but they choose to abort doesn't mean that it's our job to tell them they have sinned. It is between, them, and the lord (and for the LDS families there bishop also). Period

Anonymous | 12:22 p.m. March 1, 2008

Ok walk in my shoes, I think what the previous posters have been saying is that the infants in most of these situations are not feeling pain CAUSED BY THEIR CONDITION. Babies without kidneys are not in pain. The mother provides all of the function of a kidney while the baby is in the womb through the umbilical cord connection. The problem is that once the baby is born not having kidneys is not compatible with life. They are NOT saying that going through an abortion where the fetus is torn limb from limb or burned with saline is not painful.

Context? | 12:31 p.m. March 1, 2008

The rest of the article from (Ensign Nov. 1998 pg. 71) "But such instances are rare, and there is only a negligible probability of their occurring. In these circumstances those who face the question are asked to consult with their local ecclesiastical leaders and to pray in great earnestness, receiving a confirmation through prayer before proceeding." I am a respector of free speach and a right to religion, but dont misconstrue what is said to fit your agenda.

A mom first and always | 12:50 p.m. March 1, 2008

Thank you for this sensitive article. I have a friend whose son with Hypoplastic Left Heart Syndrome is turning 7 years old this month. He is a miracle. I have a daughter with Trisomy 21 whom the world/medical community might say should have been compassionataly aborted --- she is 12 and beautiful and typical in many ways; she embraces life more than most. She is a miracle. I have a friend who chose to carry her baby with intrauterine growth retardation for weeks before the baby died naturally. Her miracle never came. I don't think the question should be "are unborn children capable of experiencing pain" but "are they capable of experiencing LIFE," the most precious gift there is.

mom/grandma | 10:32 p.m. March 1, 2008

With two different pregnancies one of my daughters-in-law was told that there was a good chance that the baby would have mental retardation related to tests that her M.D. had preformed. Neither time was this true, both children are happy, healthy kids. I am truely greatful that she did not choose to abort either child. This is probably "the exception to the rule" out come. Ultrasound can show abnormalities that force a parent to make decisions that are heart breaking. My heart goes out to them. May God bless them.

Amy Bowers in GA | 5:41 a.m. March 2, 2008

14 years ago, our daughter Rachel was born with Trisomy 18 (Edward's Syndrome). At 4 months gestation, we found out through several tests that her condition was "incompatible with life". Our grieving process began at that moment...shock, anger, sadness, etc. We prayed that she may live one hour. At 39 weeks, our beautiful dark curly haired 4 lbs. 17 1/2 inch baby girl was born. Doctors and nurses left us alone as family held her, loved her, took pictures (this all being pre-arranged). After she passed away in my arms, she stayed with us for quite a while-like holding my favorite doll and never wanting to let go. Mortality-one hour. Her mission-continues today and forever.
I have since met children who survived Trisomy 18.

Anonymous | 6:00 a.m. March 2, 2008

I do not want to be unkind to people in a terrible and tragic circumstance; I have lived through tragedy, though a different kind, and I can only guess how difficult it must be for these families. I fear what I think may offend some. Still, here goes: It may be better for some families to terminate, and I think it is arrogant for anyone to pressure another person to continue with a pregnancy when the baby cannot live outside of the womb. Encouraging people to develop a greater attachment to a fetus or baby who cannot survive may seem compassionate, may seem to be making the best of a tragic circumstance, but may not actually be the healthiest or ultimately kindest choice. Personal experiences are interesting, but it may be worthwhile to actually scientifically research who ultimately does better (in terms of mental health, divorce rates, marital happiness, physical health, etc.) those who continue with this sort of pregnancy or those who terminate?, whether those who use this sort of approach actually do fare better. This is a new approach and merits study, but research would need to be objective, we'd need to be open to seeing whatever is.

Marni | 11:19 a.m. March 2, 2008

Thank you so much for writing this wonderful article! I too, have been blessed with a Celestial daughter. Around 25 weeks, we found out that she had many problems with her body that weren't compatible with life. After MANY prayers and MANY doctors assuring us that she was in no pain while in the womb, we know that our decision to continue the pregnancy was right. We never hesitated and we never looked back. We had so many wonderful memories with our sweet baby while I was pregnant with her! The few precious moments that we shared with her after she was born are priceless! We treasure the pictures, the footprints, and the memories of that wonderful day, July 6 2004. Our Heavenly Father loves us so much! He would never allow an innocent baby to suffer in the womb just so the parents can have what some called "selfish time to get a footprint". To the people who made these horrible comments...you have obviously not been through what we have. I am so thankful to be blessed with a perfect, beautiful, eternal daughter! I am lucky to be her mom!

REsponding to Marni | 2:35 p.m. March 2, 2008

Marni, I am glad you are able to treasure your memories of her.
Others have endured something different than you; that doesn't mean they don't know suffering, don't have their own truth to share. If you disagree, that doesn't make the other person's perspective de facto "horrible."
I wonder what you mean that Our Heavenly Father doesn't allow innocent babies to suffer? That simply isn't true. Terrible, horrible things happen to good people, including babies-- some at the hands of other humans, some due to apparently random and tragic happenstance. Our Heavenly Father may love us all dearly, but that did not stop the slaughter of the Armenians in WWI, or the slaughter of Jews, Gypsies, Gays, Catholics, Mixed Ethnicity Children, and the Mentally Ill in WWII, did not stop Stalin's murder of millions in Russia, or Pol Pot's mass murders in Cambodia. Our Heavenly Father's love doesn't stop children from dying of Polio and other preventable diseases in Africa today. It doesn't stop tsunamis, earthquakes, and so on. And famine, how many children have starved to death? Innocent, good people suffer. Bad things DO happen to good people, and I think denying that is disrespectful of their suffering.

Mark | 5:04 p.m. March 2, 2008

My wife and I were the first patients of Angel Watch as mentioned in the article. What a blessing it was for Kay and Carolyn to come to our aid, helping us deal with a difficult circumstance. We didn't know at the time that we were their first case for they were so caring and knew the right things to say. They are still considered friends and are definite agents for good.

Thank you | 7:52 p.m. March 2, 2008

Thank you for this article. Just three days ago my niece gave birth to a little boy (28 weeks gestation) with hydrops due to a virus my niece had unknowingly contracted. The baby only lived 15 minutes. This is still very fresh for our family. I know that there are different perspectives on this topic and how to address the given personal situations will vary. But on one thing we should be unified --there is no room to judge one another or to be critical of individual choices made. Tragedy brings out the very best and/or the very worst in all of us. With that in mind, the very best includes kindness and compassion regardless of personal opinion. Thank you Angel Watch for your kind efforts.

Luckiest Mom | 11:25 a.m. March 3, 2008

I had a stillborn at 38 weeks and I have said many times what a blessing she has been in my life, my marriage and my children's lives. She is our angel!

We held her, took pictures of her perfect little body, her hands, feet, toes, profile, etc. For 5 hours my family were able to be in the presence of an Angel and we will cherish every moment!

I had the luxury if you could call it that of carrying her full term, not knowing that anything was wrong. We are given what we can handle! I know I'm stronger because of my experience and I thank my Heavenly Father daily for my daughter and my other living children!

Thank you for the article because I know the support I had through church friends and family I saw and felt nothing but LOVE and kindness!!!

Natalie | 11:25 p.m. March 4, 2008

I have a daughter with Hypoplastic Left Heart Syndrome (HLHS as referred to in other posts) and I am so grateful for the miracle of modern medicine that allows doctors to find these issues and give the parents all the options, instead of being surprised by it at birth or never having it detected. I am grateful for the Norwood procedure, that it is available. HLHS cannot always be treated, as mentioned elsewhere. Surgery was not a viable option for my daughter, her complications were too severe, so she was not a good candidate. She lived 15 days, the most peaceful and wonderful time I have ever experienced. I will always be grateful to Kay Tanner, with whom my famiy worked after my daughter's death although not in the Angel Watch program. The perinatal and pediatric palliative care programs I participated in saved our sanity and our lives as my husband and I made the most difficult decision we have ever faced. Our decisions were never questioned and we only felt support and love, even from total strangers who had never done this before either, we were the first patients in PCMC's program and they were fabulous.

Alath | 6:30 p.m. March 8, 2008

Anonymous:

Perinatal hospice is not about pressuring anyone to continue affected pregnancies. It is about taking care of people who have decided they don't want to terminate. It is about letting people know that termination is an option, but continuation is also an option, and letting them choose.

Nobody is "encouraging attachment." If attachment has already taken place, and the family already regards the fetus as a child and part of their family, then it's not about encouraging their attachment, it's about acknowledging an attachment that already exists. Research has shown that most mothers experience attachment prior to 20 weeks when these diagnoses are usually made.

Until the advent of perinatal hospice, the standard medical care has been to pressure women whose fetuses have lethal anomalies to terminate. The assumption is that making the pregnancy go away will make the pain go away. Research evidence contradicts this assertion. The perinatal hospice movement isn't about pressuring women to continue. It's about not pressuring them to terminate.

swright | 9:26 p.m. March 9, 2008

I was moved by this article. I am 25 weeks pregnant with a baby girl who has Hypoplastic Left Heart Syndrome. This is our fourth child. I have struggled with many emotions since the diagnosis. I have felt so overwhelmed with sadness and worry that I have felt as though I could not handle this pain. I have told my family I am not sure how I feel about baby showers and celebrating her life since I am unsure of it. I have even found myself distancing myself from all things relating to baby.... this article gave me a different perspective. She is alive right now. She is functioning just fine while in utero (most pregnancies are uneventful it is after the birth that surgical correction is necessary for survival) and I am her mother. I have carried her and cradled her for many months now. She hears my voice. I feel her move. We are one yet two. I will cherish this more with the perspective of live in the present. Thank you.

ashey torres | 1:48 p.m. March 10, 2008

i hope you guys feel better i know that my brohter girlfriend has had 4 misscariagges and her baby is now 4 months along and i cant wait but i hope u guys have a great family and i hope you guys will feel better that was a touching story thank you and i have to go cause im in school lol well thanks for the story

love ashley torres

Stone-Ehrhardt | 12:54 a.m. May 6, 2008

My daughter had Hypoplastic Left Heart Syndrome and other complications. My husband and I went to the best hospital in the world to have her in Philadelphia. I cherished her in the womb and the moment she was born was the most fantastic in my life (besides marrying my husband). The doctors could not save her, but we gave her the best shot we could at life. I know she wanted to be with us, I could feel it. I wouldn't change having met her here in the world for anything. And no, I didn't get to "bond" with her. I touched her little foot, she was given some sleeping meds and rushed to surgery. It was the hardest thing I ever did in my life. The hardest ever--but my husband and I both felt she deserved the best chance we could give her. It was the right thing to do. I still miss her every day.

Carlie | 3:38 p.m. Sept. 3, 2008

I am writing a paper on Perinatal Hospice in school. I have read most of the comments and think everyone is entitled to there opinion. I, for one, thought this article was touching, expressive and perfect. I am glad to hear that people are doing something to help families that endure such heartache. I would hope to never go through that situation, but if I did I know I would have people to lean on. Thanks.

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