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Advice and support after a poor prenatal diagnosis
~Welcome~ Receiving news that your unborn baby has a medical problem is devastating. I hope that you can find comfort and support here. Maybe you are considering terminating your pregnancy and are seeking advice from others. Or, perhaps you just need support while dealing with this news. Please feel free to post your feelings and concerns regarding your pregnancy. This board is checked daily.

--This is moderated board, which means your message will have to be approved by the moderator before it will be visible. To speed up this process, feel free to E-mail the moderator to alert us of your new post.--


http://www.geocities.com/pregnancyhelpnow/termination_for_medical_reasons.html

Subject: cystic hygroma-hydrops any help please!!


Author:
Carole
[ Edit | View ]
Date Posted: 02:03:32 01/19/03 Sun
Hello,
My sister in law, Jill and brother in law, Ron,
found they were expecting.. which was such a joy.  But
unfortunately a few weeks ago (during a sonogram) they
found complicatons with the baby.  After seeing a
specialist and other tests they were informed that the baby
was diagnosed with Cystic Hygroma.   This week after the last sonogram it showed the baby was surrounded by fluid.  The baby's head is lemon shaped due to the fluid pressing against it's temples, there is fluid in the lungs, the kidneys are under developed and
they feel it is best for them to just terminate the pregnancy.
          Ron is a strong Catholic and very Pro Life,  Jill, I know
feels the same way.. but the medical field keeps telling her
to terminate the pregnancy and she is being torn now with
what to do.  After reading and hearing of different cases
it seems there still can be a small ray of hope that a miracle
could happen and the baby be normal.. but in either case..
I'm very worried about Ron and Jill now, being torn with
what to do or not do.  Jill has gradually been closing up
and not answering the phone.. going out to see people
and now wants to go away "alone" for a few days to
think things over.  Which I don't think is a good idea..
        Ron and Jill are both in their early 40's.  They just
got married Feb of 2002, this is both their first pregnancy.
They are wonderful people.. very caring for others and
pretty much strong stable people.  But I am as I said before
worried about Jill's mental well being.  She has "alot" to
think about and has had mostly negativity thrown at her
at this point.  If there is anything you could pass on to
possibly help them in this situation, I'd be ever so grateful.
Thank you so much for your time..  Take care! 
God Bless!!

      Carole Eichner

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Subject: cystic encephalomalacia, dystrophic calcifications and more


Author:
Gebre's MOM
[ Edit | View ]
Date Posted: 10:51:04 08/17/05 Wed
Has anyone had a baby with cystic encephalomalacia, dystrophic calcification, seizures, microencephalopathy and “mild background suppression” results on an EEG.?

I know this forum is more for the prenatal period, but some ot these conditions are detected in the womb. I am hoping someone can give me real –world advice. We’ve seen over a dozen DR.s both in Jamaica and the US and EVERYONE is giving different opinions and prognosis, but few seem to have a comparable example to point to. Below is the summary of my son’s illness- originally typed up to be submitted to neurologists, but PLEASE read and maybe you can shed light or link me with someone who can.

If you have had a child with similar conditions, what has been your experience, with feeding, with motor developement, speech development etc?????

THANK YOU!

My 4 month old son was hospitalized for 10 days at 3 weeks of age with suspected bacterial meningitis. He was born and subsequently hospitalized with the meningitis in Jamaica, where I was living at the time. He was treated with antibiotics, though the CSF culture never grew, it appeared that he responded to the treatment and was sent home at the end of the course of antibiotics.

Post hospitalization his appetite was fine but I had several concerns- mainly he had lost his ability to track my face, and never seemed to look at me. The DRs. Advised me this was normal at his age (he is my 4th child and I KNEW something was wrong). Also, he was ALWAYS fussy- needed to be held every waking moment to be soothed. Other disturbing symptoms were a rhythmic jerking of his hands and feet (in unison) whenever he was asleep in the car (the roads in Jamaica are very bumpy- I felt the sleep and the bumps combined were causing some type of reaction). To this concern I was advised he probably had sleep myclonis.

3 weeks ago his private pediatrician on the island told me his soft spot was gone and she ordered skull x-rays. They revealed cranial synostosis. I then flew him to the States to our local children’s hospital. They did a CT scan and the DR. came in to advise me of the results with a very grim face. He basically gave my son a death sentence. When I told him I didn’t want my son dying in a hospital hooked up to feeding tubes and breathing machines, he said “You will have to make decisions like these in the very near future” also when I asked if he would ever walk or talk “I can say categorically without a doubt, NO”

This ER DR. prescribed Valproic Acid and referred me to a nuerologist. Within a day of starting on the med. My son’s fussiness literally disappeared. The neurologist apt. was a stark contrast to the ER visit. The neuro. Advised us that he saw no breathing machines or feeding tubes in my son’s future. Said the important thing was to keep him on med. And to start physical therapy. Said that no one should say he will never walk or talk. He ordered an EEG, which has been done, but I don’t yet have the results of it.

A few days ago he started with a pediatrician- she said, based upon the CT results she had received ahead of our visit, she expected to see a child who was not even moving any limbs. He exceeded her expectations – however she said based on the CT she didn’t think he would ever be able to walk or talk.

On the positive side, his previous noises were only the tell-tale high pitched scream, and regular crying. Two days ago he began to laugh and attempt to coo. He has also began smiling on a more regular basis, especially when I hold him and do deeper up and down type motion with him.

My concerns at present are this- at 4 months of age he is 14lbs and 11oz- his appetite is healthy however there are times where he wants to eat (he is strictly breastfed) and he seems unable to. There are also times when he is eating and all of the sudden he will begin to choke(aprox. Every other day this occurs). How is this related to his condition, and could this get worse?

He is currently on 1.8cc of valproic acid, every 12 hours. Could this be altered? He often seems fussy two hours before his next dose is due.



My other concern is general lack of information on his prognosis. Where can I find information on similar cases?

I have included the CT results below.

UNENHANCED HEAD CT
HISTORY: Microcephaly, abnormal neurologic exam. Past history of meningitis.
TECHINIQUE: Axial images are available from the base fo the skull to the vertex without contrast and are reviewed on bone and soft tissue window settings.

There are no prior studies for comparison.

FINDINGS: There is marked bilateral cystic encephalomalacia of both cerebral hemispheres. There are also extensive dystrophic calcifications in areas of residual cortex and in the thalami bilaterally. There is relative sparring of the brainstem and posterior fossa. There are also cystic changes in the region of the external capsule. There is secondary cranial synostosis of the sagittal suture with ridging and overlapping. The remaining sutures are also small and ridged with sclerotic margins.

CONCLUSIONS: There is severe cystic encephalomalacia involving both cerebral hemispheres with dystrophic areas of calcification, mild ventriculomegaly, and secondary suture closure due to lack of brain growth. The changes are most likely secondary to a perinatal infection.

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Subject: Cystic Hygroma's


Author:
Shannon
[ Edit | View ]
Date Posted: 09:56:57 10/23/03 Thu
Hi everyone,

My husband and I learned 2 weeks ago during a random ultrasound that our baby has a cystic hygroma. It is a moderately large cyst on the left side of the neck. We had the amniocentesis yesterday and are anxiously waiting for the results. We are having a girl and we have been told that the most common thing to worry about is Turner's Syndrome. We don't know alot about either, alot of unanswered questions. We do know that our baby's heart is in great working condition as per our echo cardiogram. The doctors do not give the reassuring answers you want to hear. We have been told that babies dont normally live to the 2nd trimester with a hygroma, but ours has. This does make it hard to cope for the next 2-3 months not knowing a whole lot until she is delivered. Anyone with information or going thru the same situation please email me.

With GOD all things are possible!

Shannon

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Subject: Fluid found on Brain during early ultasound


Author:
Sue
[ Edit | View ]
Date Posted: 18:46:54 03/17/04 Wed
A close friend of mine who is 13 week pregnant was told at her last ultrasound that there is too much fluid on the brain of her baby. The doctor told her that 2mm was concered that top end of normal and that there was 3.6mm on her baby. Because she is young (24) the doctor said that the rick for Downs symdrom would go from the normal 1/900 to 1/60 and that the other possibility might be a congenital heat defect. I was wondering if anyone knows any stats on this fluid dissapearing and the baby being born with minimal to no effects from this. Any help would be greatly appreciated.
Thanks Sue

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Subject: Women's stories sought for book about giving birth against medical advice


Author:
Philippa Peck
[ Edit | View ]
Date Posted: 00:00:14 11/30/03 Sun
I've been searching the internet, and came across this website.

I am wondering if you might be able to help me.

A friend and I are writing a new book of women's first-hand stories of giving birth AGAINST MEDICAL ADVICE. We hope to include stories from women who have continued pregnancies despite maternal illness, or poor fetal prognosis, including stories from women whose babies have died.

This book will be co-edited/co-authored by Melinda Tankard Reist (Australia) and myself, Philippa Peck (New Zealand). We have secured an Australian publisher for this work, which will have an international scope, and would be very appreciative of any assistance you can give us in securing stories. The book is due for publication late next year (2004) and will be published in English.

We have recently launched an information website (www.defiantbirth.com) for this project which includes an overview of our proposed book and contact details.

Thank you.

Philippa Peck
Subject: re:cystic hygorma


Author:
calvin
[ Edit | View ]
Date Posted: 12:16:10 10/15/03 Wed
me and my girlfriend had a 12 week scan,which to our suprise there was a problem.the scan took place at prince phillip in llanelli,they told us that it could be a encephalcele,which is the brain tissue moving away from the scull,they then transfered us to the heath university hospital of wales,where i found the consultant to be very professional,after the scan had taken place it emerged that the baby had a chromosone problem called cystic hygorma!we were asked to undertake either a cvs or a amniocentesis,the cvs was done on the day at a risk rate of 1% of mis-carriage,we decieded to go for a amniocentesis as it carries a lower risk rate,and is more accurate,the amniocentesis is taking place next tuesday when my girlfriend is 14 weeks.the baby has a 20% chance of having nothing,a 30% chance of loss and a 50% chance of downs or turner syndrome or cardiac problems,it is a very trumatic time for me and my girlfriend as we are a young couple, i am 20 and she is 19,does this usually happen in young couples.to everyone else who's going through this keep the faith!and to all the blokes be strong for your woman

Replies:
Subject: Cystic Hygroma


Author:
Cystic Hygroma Adult
[ Edit | View ]
Date Posted: 17:52:29 03/18/08 Tue
I hope this post will help parents who have just received a diagnosis of Cystic Hygroma have hope. I am a 36 year old female living a "normal" life with Cystic Hygroma. I have a career, I am married and have 4 healthy Cystic Hygroma free children. I started a group, blog and friendship page to help point parents to resources and information that may help them through this difficult decision. There are other adults, teens and children on my friendship page living well with Cystic Hygroma. There is also, a wealth of information that will help you make a well informed decision and may offer you some peace.

Myspace Friendship Page: myspace.com/lmnetwork
Myspace Group: http://groups.myspace.com/lmnetwork
Subject: To: Parents who've received a poor prenatal diagnosis


Author:
Shellie
[ Edit | View ]
Date Posted: 13:35:45 10/13/07 Sat
Dear Parents,

I just wanted to let you know that my heart goes out to you as you struggle with the pain of learning that something is wrong with your little one. Feel free to post here with questions, requests for prayer, opinions, or just to get your feelings out.

Please start a new thread by clicking on "Post a New Message", located at the top right of the screen. It's so much easier for others to find new messages when they are in their own thread.

Kind regards,

Shellie
Subject: Pregnancy after Trisomy 18 AND anencephaly


Author:
Leona Coulter
[ Edit | View ]
Date Posted: 06:41:10 02/20/07 Tue
I'm writing on behalf of my sister-in-law as she is
too distressed to write herself but is desperately and
anxiously seeking information.

She has had three pregnancies which all ended in sad circumstances: Her first baby had anencephaly; her second was a miscarriage and her third had Trisomy 18 (Edward's Syndrome). She is just 28 years old.

She is not aware of a link between anencephaly and Trisomy 18. She has been referred to a prenatal genetics clinic but may have to wait 6 months to see a counsellor. Has anyone experienced BOTH of these problems? Is there any hope for her to have a healthy baby after everything she's been through?
Subject: Cystic Hygroma


Author:
Angela
[ Edit | View ]
Date Posted: 14:48:34 05/23/05 Mon
My 36 year old sister is 14 weeks pregnant. At 13 weeks an ultrasound was performed showing a significant cystic hygroma on the back of the neck of the fetus. The doctor's are not giving her any hope, they've bombarded her with worst case scenarios. She has declined an amnio because no matter what, she has decided to go ahead with the pregnancy. My heart breaks for her. It is her first child. She had difficulty conceiving, but after 8 long years, 6 failed Intrauterine inseminations, and 1 Invitro Fertilization cycle she became impregnanted. She is devastated by this news. Does anyone have some information that may give her some hope? I live near Boston, so I have suggested she go for a 3rd opinion at Children's Hospital. Has anyone heard of the EXIT procedure? Does anyone know someone who may have had this procedure?

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Subject: Possibly having to choose to terminate or not


Author:
Heather Bailey
[ Edit | View ]
Date Posted: 19:24:14 03/15/05 Tue
I have a healthy 7 year old son. In 2001 I had a baby boy that passed away at 5 months due to cystic encephalomalacia (cysts that take over the body). They did not discover this until after he was born. They thought it was a freak thing and wouldn't happen again. So in 2002 I was pregnant again. I was going to a maternal fetal center, had numerous ultra sounds and amniocentesis everything was normal. When she was born she stared having problems. She was diagnosed with the same thing. She passed away at 4 months old. The only thing similar with them on prenatal u.s showed cpc's which usually is normal if there are no other abnormalities which there werent. Also the afp was abnormal but further testing came up normal. We were told it might be genetics we had every test there is to be done they still aren't sure. So they said we would have a 75% chance of having a healthy baby.We want another child very bad and decided to try one more time we thought for sure it won't happen again. I am now 20 weeks pregnant. I just recently had a u.s. done baby was fine again except for they found cpc's again. My afp was normal. I am scheduled for a fetal mri on april 1. Whcih might and might not tell if this child will have the same thing. I will have to decide that day if I want to terminate or not. I am going crazy trying to decide the right thing to do. My husband wont really talk about it because he wants me to keep it no matter what. My son says he wants to keep it cause it is his brother and he'll love it no matter what and he wants to see it. I have mixed feelings. I know I'd love it and take the best of care of it while he is here. But I've already buried 2. I don't know if it's right to bring another child here on this earth to possibly suffer and will eventually pass away.The first baby didn't really suffer but the second one did. If anyone has any suggestions I'd greatly appreciate it!

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Subject: To: Liz


Author:
Shellie
[ Edit | View ]
Date Posted: 16:35:26 06/07/04 Mon
Hello Liz,

I just approved your message and wanted to post a message at the top so you would see it...it's easy to get lost in the other thread.

I'm so very sorry that you have been given a poor diagnosis. I will post more for you at a later time when I can dedicate more time to the post. For now, please know that I am praying for you and your little one!

Please post here as often as you like. I'll write again tonight or tomorrow.

Take care,

Shellie

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Subject: To Lorna RE: Cystic Hygroma & Low Aminotic Fluid


Author:
Shellie
[ Edit | View ]
Date Posted: 14:30:56 04/10/05 Sun
Hello Lorna,

I posted a message to you, below. I just wanted to start a new thread for you because it's hard to find your post in the other thread. Please continue to update this board and feel free to e-mail me any time. Here is a link to my post to you:
http://www.voy.com/84292/183.html

Take care,

Shellie
Subject: Hydrops


Author:
Laurie
[ Edit | View ]
Date Posted: 16:00:24 01/16/04 Fri
Hi, my name is laurie and I just found out yesterday by ultrasound that my baby has hydrops. Where I live, nothing is known about it. Noone has any idea what causes it or what the treatments are.
I am really confused, scared, and feel alone. I don't know what to do. I had some blood work done today, but won't know the results until Wednesday.
I am in my 20th week. I wasn't informed of they cystic-hygoma and I'm wondering if this is another blow I may receive on Wednesday.
What has anyone done for treatment? Is there treatment? I read about Umbilical Transfusions. Has anyone done this?
Please, I am really in the need for some help and advice.

Laurie

P.S. To all you other moms with the same or similar conditions, I totally understand the fear and emotions that accompany this. I will be checking this site often. Thank you again for taking the time to read this.

Replies:
Subject: Cystic Hygorma


Author:
Lisa
[ Edit | View ]
Date Posted: 07:58:21 03/19/03 Wed
My husband and I have been ttc and with the help of a wonderul dr. and his staff we finally did.
\nEverthing was going the way it was suppose to until, last
\nThursday when the dr. said he notice a nuchal translucency on the baby's neck.
\nWe immediately called our OB(who just happened to be high risk) and explained the situation. He had us do another ultrasound and it was confirmed that the baby does have a lateral cystic hygroma. A CVS was done the same day. We are now awaiting the results. Our Dr. said we have one
\nof four outcomes........1) Down Syndrome 2) Turner Syndrome
\n3)Normal/healthy baby 4) normal baby with cardiac problems.
\nAt the moment I am feeling really down, however, yesterday I felt really good and positive. There are so many things
\ngoing through my head. My husband is being really great about this, he is keeping strong.
\nPlease Help!

Replies:
Subject: To: Brad


Author:
Shellie
[ Edit | View ]
Date Posted: 01:33:55 05/06/04 Thu
Hello Brad!

I just read your newest post and I feel very encouraged! I know you are trying to not get too excited, but I have to say your news sounds very promising!

You mentioned that you posted a message recentely but don't see it here...are you referring to the post fromMay 3rd?

Monica and I replied to your post from May 3rd, if you posted another one, I can't find it:(

Please keep us updated! You and your wife (and baby of course) will be in my prayers.

Take care,

Shellie

Replies:
Subject: Cystic Hygroma - Not a death sentence


Author:
James Harvey
[ Edit | View ]
Date Posted: 07:50:31 03/12/04 Fri
This is my first time visiting this site, but I have been touched by the agony many parents have been (many times needlessly) put through concerning the prospect of a baby with cystic hygroma. I am not belittling the problems that are all too often associated with cystic hygroma, but do want to offer encouragement and hope to many of you.

I was born February 21, 1956, with a rather pronounced cystic hygroma in the left side of my face and neck. My mother thought I was hydrocephalic when she first saw me. Needless to say, it scared her a bit. The doctor quickly explained what the problem was and relieved her anxiety quite a bit. I kept my bulbous "trophy" until I was two and one-half years old. That was the earliest time that doctor's wanted to attempt surgery in those days. Everything went wonderfully. I was tall for my age during elementary school years and 'a fast learner'. My IQ is well above average. Today I am a little over five feet, ten inches tall and somewhat overweight but in generally excellent health. I have a wife and two children, both very healthy.

So there are those of us who prove that doctors' opinions are not always rooted in 'fact' but oftentimes just playing the statistics.

Hope this gives some encouragement to some of you.

Sincerely,
James Harvey

Replies:
Subject: Message for Nicole


Author:
Shellie
[ Edit | View ]
Date Posted: 09:52:16 11/28/03 Fri
Dear Nicole,

Thank you so much for posting here. I admire you for giving your baby a chance. This has to be a nightmare for you and your husband. I will keep you and your baby in my prayers. Please feel free to post here and share your feelings as often as you like. You can also mail me directly at bc300yds@hotmail.com

Thoughts and prayers~

Shellie
Subject: To: Elizabeth


Author:
Shellie
[ Edit | View ]
Date Posted: 10:09:07 11/15/03 Sat
Elizabeth,

Thank you for your November 7th posts. I'd love to talk with you off the board, do you mind e-mailing me at bc300yds@hotmail.com ?

Take care,

Shellie
Subject: Trisomy 13


Author:
John Van Schaick
[ Edit | View ]
Date Posted: 10:22:31 11/01/03 Sat
Our unborn child has been diagnosed with Trisomy 13. We are about 16 weeks into the pregnancy. Every Dr. we've spoken to has advised that we terminate the pregancy. What is the pro-life position on this and why?

Replies:
Subject: Debating Very Bad prenatal DX


Author:
Elizabeth
[ Edit | View ]
Date Posted: 13:21:57 11/07/03 Fri
I got a very bad dx for my daughter almost a year ago when I was nearly 30 wks pregnant. Yes, she could possibly make it through birth. Yes, it was possible - not likely - but possible she could live several years with lots of medical intervention. But she wouldn't live to 10 and if she lived to 5, we could consider that a miracle. She would never talk, walk, use her hands. It was highly unlikely she would ever smile or hold her head up.

We were given termination information & heavy-duty neonatology & neonate subspecialty information.

So, end her life, or agressively prolong her life.

She was moving inside me. I needed DESPERATELY to hold this little girl in my arms. And I'm not sure that's possible after an abortion, but I knew that for me, it would not work to abort, and then hold her body in my arms. I HAD to have her in my arms, even if she was born still. And I had to see what her life was -- I wouldn't cause her pain without a very strong compelling reason, but I also had to watch her life unfold. To me, that's being a parent: witnessing the unfolding of the life you helped create.

She started breathing on her own after delivery, and lived over 5 months. When her body seemed strong enough to benefit from more treatments, we gave her more treatments. When her body seemed done, when she began to turn away in her own very subtle manner, we held her and loved her and kept her comfortable, so that she was held in love every single moment of her life. We found support in palliative care and then hospice care. ...Not always available for pediatric and perinatal cases -- REALLY necessary & something we're now supporting through a hospice endowment.

I guess my point is, we got a bad diagnosis. A really bad one. And we made sure it was a real diagnosis. And then we acknowledged reality. Because sometimes dr are wrong, but lots of times they are right. And babies do die.
But we found a way to acknowledge reality, and STILL hold an INCREDIBLY beautiful little girl, and take her on family vacations, and love her to pieces.

We're not saints, it isn't easy, and any remaining naivete about decorating a baby's room during the 20th week of pregnancy is gone. ;-)

But, faced with the same dx, I would make the same decision in a heartbeat. I can't even possibly explain the awe and joy that touched our lives and those of family & friends all around us just be sitting back and witnessing the completely unknown journey of this girl.

Maybe other expecting parents in a similar situation might see a third choice with my note. Witness your child's life unfold. See what it is.

You can hold your child, you can witness what unfolds, you will make it, and ultimately, you will be amazed. I don't know that the grief is more or less by not holding your child. I'm a mother, I already carried this child, I NEEDED the child in my arms. And ending her life unnaturally seemed to me as wrong a choice as forcing her body to live unnaturally long.
1 hour, 5 months, 45 years, 97 years...I'm just not qualified to choose the moment to end. But I am qualified to provide love and comfort and be a "mother bear" to require peace in every moment that is granted.

Blessings...
Subject: Message to Teenage girl with Cystic Hygroma (Janet)


Author:
Shellie
[ Edit | View ]
Date Posted: 20:12:27 10/25/03 Sat
Dear Janet,

Thank you so much for posting here! Welcome to the board. I hope you stick around and fill us in with details about your life. You may be able to reassure some mom's who come here looking for information on Cystic Hygroma. Please post again and tell us a little about yourself!

Take care,

Shellie
Subject: My miracle boy


Author:
Shelly Dowdle
[ Edit | View ]
Date Posted: 18:16:02 11/17/02 Sun
I had my first ultrasound at 30 weeks and was told our son had PUVs and would not survive past birth. There was nothing to do but go home and wait for him to die.

Anyway, that was over 10 years ago and Bryan is still with us. He's been through many surgeries, dialysis, kidney transplant, etc, but he's happy most of the time and unlike the doctors told us after he was born, his life is not of poor quailty at all!

I want to help other parents who have a child with similar problems and those expecting a child like this.

There are treatments out there if you know of the condition soon enough. I don't want anyone to feel as alone as me and my husband did those long years ago.

Shelly, mom to Bryan - 10 (PUVs, 4 years dialysis, kidney transplant, g-tube, autism)

Bryan's Kidney Page - http://www.bryanskidneypage.org

Replies:
Subject: ATTENTION: Yvonne


Author:
Shellie
[ Edit | View ]
Date Posted: 19:40:21 10/14/03 Tue
Dear Yvonne,

I'm so sorry that you received a poor diagnosis. Thank you for posting here. I tried to e-mail you earlier to appologize for the delay in approving your message, however, the e-mail was returned. I hope that you come back and check the board. Please e-mail me, I'd love to offer my support during this tough time.

Take care,

Shellie
Subject: To: Mike


Author:
Shellie
[ Edit | View ]
Date Posted: 09:19:47 09/29/03 Mon
Mike,

Your post on another thread really touched me! I hope you will stick around and provide hope for women who are looking for information on Cystic Hygroma. Thank you so much for posting!

Sincerely,

Shellie
Subject: Re: cystic hygroma-hydrops any help please!!


Author:
Melanie
[ Edit | View ]
Date Posted: 02:08:00 01/25/03 Sat
I am having trouble tonight getting the links from the main page to work on the site that I just posted. Here is a page of parent letters that might be of some benefit.

http://www.erichad.com/wwl/preg.htm

--Melanie
Subject: RE: cystic hygroma-hydrops any help please!!


Author:
Melanie
[ Edit | View ]
Date Posted: 01:56:41 01/25/03 Sat
I am so sorry to hear about your sister-in-law's dilemma. She must be going through pure torture.

The problem with the medical profession is that they generally feel that they are doing a woman a "favor" if they terminate a pregnancy if the baby's condition is fatal or if the baby is severely deformed. Most doctors are not well-trained in grief issues... their specialty is medicine. The delivery is probably difficult for them to see, and just having the pregnancy ended seems like the "easiest" way to go for everyone. I do think they mean well.

First of all, it sounds like your SIL may be well into her pregnancy. If that is the case, abortion may be riskier for her than delivery. I don't think a lot of women are told this.

I agree that having an abortion increases the guilt factor a great deal. There are always those nagging "what if" questions. Doctors are not Gods, and they are not always right 100% of the time. I wouldn't want to use that to give anyone false hope, but it is something that weighs on my heart and mind a lot when considering such things and in the end may end up weighing on your SIL's mind as well. The real truth is that terminating the pregnancy robs her of the precious time that she does have with her baby. It guarantees one particular outcome and does nothing to end her suffering.

There is support for woman who receive a diagnosis where they do not expect the baby to live. I hope this site can be of some help.

http://www.erichad.com/wwl/

You may have to talk to the baby's father first, and just provide him resources to help them get through this. I hope she won't shut him out. That would be tragic all around.

I wish you all the best.

--Melanie
Subject: my thoughts


Author:
michele
[ Edit | View ]
Date Posted: 12:46:32 01/22/03 Wed
Carole,
I'm sorry about your sister in law's baby. I've talked with a lot of women on pregnancy and termination boards and there seems to be one prevailing thing. The doctors push termination. My friend's water broke at 19 weeks and the first thing her doctor said was "do you want me to induce to finish what nature started?". She was crushed. She didn't listen and found a new doctor. Now she has a 4 week old little girl who is healthy and just about to come home from the hospital (she gave birth at 30 weeks). Maybe your sister can find a prolife doctor in her area? They may fight more for the baby. I'm not an expert on this condition, but I have talked to others and it seems to be a very serious condition. But even if the doctors say "100% fatal" that doesn't mean she has to terminate. I think that adds guilt on top of the grieving. It also gives the baby no chance. As much as the doctors are experienced and educated NONE of them can predict the future!!!!

Here are some sites that may be helpful:
www.benotafraid.net
http://www.erichad.com/wwl/
www.pregnancycenters.org (prolife, counseling, list of prolife doctors)

Take care,
Michele
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