Heartbreaking Choices

Michelle - posted on 02/03/2009 ( 11 moms have responded )

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We found out at 20 weeks that our unborn child had several problems. 3 doctors and 2 weeks later, the diagnosis was a fatal form of skeletal dysplasia plus fetal hydrops. So in a nutshell, our son's chest cavity was no longer growing to accomodate his thriving heart, lungs and other organs. In addition, his body was filling up with fluid that had now reached his skull. We had been advised that IF he made it to term, he would most likely not make it through delivery......and IF he made through delivery he would require immediate surgery just to be able to eat (his SD also affected the positioning of his jaw). So on Aug 16, 2005, we chose to end our son's suffering. I chose to deliver him instead of having a D&E. Austin Bernand was born still at 2:07 p.m. on AUgust 17, 2005. The doctors and nurses were wonderful and allowed us time with him. We had been counseled to bring a camera which thankfully we did. The nurse took photos of the 3 of us which I am now able to look at without feeling a tremendous amoutn of pain. We buried our son at a local cemetary and had a grave side service. I visit him often. In December 2006, we had a Safe Arrival in the form of our beautiful daughter Autumn. I know her brother is here looking out for her.

I tell my story to show that there are those of us out here who have made this choice out of love for our unborn child and not as birth control. This is a sensitive subject and not really discussed except in a negative light. As a result, I often feel alone. I know there are others out there who feel the same and I welcome your comment.

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Paula - posted on 02/24/2009

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Hi all



Celia....this must be the most hardest pregnancy....have you had many ultrasounds?  have you had pictures taken?  if so cherish them....love them....love him forever.  when he is born....love him more and more and what ever time you have with him.....he will know how much he was loved.



you are very brave....I don't know if I could live what you are living....



its hard to tell you anything that will make snese in all of this....makes you wonder why things happen.....



and don't worry I won't tell you they happen for a reason....I am tired of that line.  I don't ever want that said again....cause a mom who goes through this doesn't care about the reason....we hurt regardless.



take care



 

Celia - posted on 02/19/2009

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I completely understand where all of you are coming from. It takes LOVE to go through with whatever choices you feel are going to be best for YOUR baby. I am currently pregnant with a baby boy, Noah, who has been given the diagnosis of anencephaly whihc basically means he will have most of his brain and skull missing and the part of his brain that he does have will be exposed. I did contemplate being induced when we found out at 19 weeks. But, in truth, I wasn't able to do that. I had previously had a D&C when I was younger and I just didn't think I could live through that again. Still, this has been a very difficult road. I feel like I am going crazy because I am grieving for my son before he has even passed. Just the knowledge that he will not live (though he is very active at the moment in my belly....moving normally even) is almost too much.



I am so very sorry to hear of your loss (all of you). Losing a child, no matter the age or situation, is not something any mother should have to go through.

Paula - posted on 02/13/2009

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Hi all



Holli



I am sorry for your loss and it seems so hard to think of what they told you and yet there was no downs syndrome....having no kidneys would have been fatel outside the womb.....but knowing how long you could have had him in you for longer....did they ever tell you transplants would have been a possible outcome? I don't know if that has ever been done in new borns....but living on dialysis until a kidney would have been available....Oh I don't know...so many things we don't know at the time and some times the doctors don't always tell us the options....and what to look for.



I am happy you are accepting this....even as you said the pill is large and hard to swollow....



take care...



 



 



 

Holli - posted on 02/13/2009

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how amazing it has been to read all these stories ... July 15th 08 I was involved in a very violent car accident , at the time I was 16 weeks pregnant , after being taken to the hospital I was told they found what they called "an incidental finding" not related to the trauma of the impact ...BULL anyway bottom line I had very low amniotic fluid and was shipped off to another hospital , 7 hours later the prognosis was fatal , I had to go home and wait for 5 days to see a specialist ...at that time they performed another ultrasound done by a doctor ,who told us that it looked as though my son had down syndrome and many other defects ,biggest of all being no kidneys ...Bi-lateral renal agenisis ... I had told the doctors that I had been leaking fluid over the coarse of those days but they insisted this was not related to my accident and on July 22nd after seeing 5 doctors @ Kaiser I was told I had to make a decision of how and when I was to terminate my pregnancy . There was no chance for survival ,my son was suffering w/ no fluid to protect him ,his limbs and head were becoming disfigured . It was the most painful thing I have ever experienced to see my baby in that condition . I chose to deliver him ,could not bare the thought of having him ripped out of me ,nor could I wait another day . I left the hospital on July 22nd w/ Lamenaria inserted inside me to induce labor and was sent home only to return the following morning to end my babies life , after 13 hours of labor and a continual heartbeat ,he was born it wasnt until hour 12 inside the birth canal that he passed , I asked that the doctor keep the machine on so I could hear his heart beat until it stopped , I needed to know when his spirit left my body ..I then held him in my arms and said goodbye , I will never forget the feling of his warm little body .. I couldnt bare to look at him because of the way the doctor described all the damage the lack of fluid had caused . They took pictures of him for me and the next day I was sent home ...My son was sent off for an autopsy as per my request , I needed to know ,the results came back that he was perfect all chromosomes no down syndrome 10 fingers 10 toes ...but no Kidneys .just buds as they called them .although he had a bladder which in my research isnt conclusive w/ Bi-lateral renal agenisis...my story is unique in a way that I know in my heart the accident I was in caused my water to break , i will never know if my son would have survived .. which is the ache i will live w/ for the rest of my life ..I'm sure after reading this it wouldnt seem as though I havent found any peace but I have ,I have had to accept that I will never have the answers ...hard pill to swallow ..my son "max" sits by my bedside in an urn and I speak to him daily ...if anyone out there has a story similar to mine ,please respond ...my prayers are w/ all who have lost there unborn child for any reason.



xxxxx



Holli

Michelle - posted on 02/12/2009

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thank you for all your comments and stories...it helps to know we are not alone

Keryn - posted on 02/07/2009

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Hi  Michelle, I also found out at 20 weeks that our unborn son would not survive after birth if he survived the pregnancy full term at all.  His brain was growing too fast for his scull his fingers & toes were fused together his eyes were damaged, his heart hadnt developed properly & more...We decided to induce & after 36hrs I delivered Harrison stillborn at 3.30pm Friday 5th November 2005.  We had a older son 2.5 yrs, I explained his brother had died & he was very good & we talk about him often.  I went on to have another son in April 2006 & I believe Harrison is with us here in spirit & keeping an eye on my beautiful boys.  Thank you for telling your story we really do think we travel alone & I know it was a difficult decision but when our children are involved no decision is an easy one.       

Wanda - posted on 02/06/2009

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You stepped up to the role given to you as MOTHER. You did what was a educated medical option . Bless Austin. I love the name of Autumn for your daughter.

Michelle you are not alone in your thoughts of certain subjects being "negative light", but in that light is a GLOW well recognized to many as a ray of LOVE.

I really do want to leave a comment with you to explain how what happened in your world August 17, 2005, is not so vastly different from other medical decissions made using educated options & LOVE at the time of sensitive situations.

Role reversal, the parent is in a body destroyed by trauma, a few organs live on machine & most are not fixable ( they are non operating). The machine is to allow family to arrive, give them the dignity to be the humans with the "final say".

Who ???? is anyone to judge in negative light ???? a decision made of deep responsability and love.... IF .... they are so uninvolved it is not them making the plans for a grave side service, it is NOT THEM returning often to visit. Certain roles of being family are trials of strength and faith. I admire you mom, stay strong.

Paula - posted on 02/06/2009

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HI Michelle



I have not been trhough what you have but I beleive you did the right thing for your baby.  compassion goes a long way and not surviving out of the womb is just not surviving.  Yes I realize it is not talked about but this is the place for it and people must learn that decision are made in regards to babies and their well being....you made that choice for your baby and it is no ones buisness to criticize you....they were not in your shoes....I commend you for your bravery

Elizabeth - posted on 02/05/2009

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Hi michelle l understand how you feel . my daughter would of been 17 this year and she would of benn born with a lot of health problems or l was told live a few days afer she was born as she was not formning in the womb well. l give birth to her five months

as her hard had stoped even though l went on to have other kids. l miss her but the comfort . l get is knowning she is not in pain but in a place and she will always be my star. .l hope these words ill be some comfort to you. take care Michelle . Elizabeth

Renee - posted on 02/04/2009

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Hi. I was pregnant with a little girl that had Osteogenesis Imperfecta Type2.It is a lethal disorder where she too had a chest cavity that would not develop enough for her to be able to breathe on her own. Also her bones were so brittle that she already had multiple fractures in-utero. I was basically told that the only reason she was still "alive" was b/c I was breathing for her and that if I carried to term she would die during or right after delivery. I found out when I was 23 weeks. I knew something was wrong so I had switched doctors and they saw it at my first visit. What makes it so hard is that since I was so far along I had to have labor induced, but the choice was still up to me. Three days later I delivered her.My new doctor was in shock that I wasn't told earlier since it's a disorder they can see at 15 wks by ultra sound. That was March 14, 2006 and now we have a perfectly healthy 5mnth old son that I am so grateful for. I still to this day feel a bit of guilt for making the choice to end the pregnancy but I just have to remind myself that it stopped her suffering.

Heather - posted on 02/03/2009

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Hi Michelle,



We also had AHC in 2005. I was 19 weeks pregnant we found out our beautiful little girl also had severe fetal hydrops such that the U/S tech couldn't even locate her kidneys and liver and cystc hygroma. The doctor said she was dieing and certainly wouldn't make it to term so we chose to terminate on March 15, 2005.  I feel your pain and I live with it every day. I miss her.  I now have two more healthy and beautiful girls but often looking at them makes me wonder what she should/would look like now.  Thank you for speaking out.  I don't get to talk about Emily very often because people often just don't understand.

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