Chromosome Test Results

[carissa13]

My sweet boy was born 4 weeks ago today and it is a very sad day! My genetic councelor called me today with our test results and it appears that we will not get an answer. A cord blood sample was supposed to be taken and it was not. They only took a placenta biopsy and the results lead them to believe that is was my uterine tissue they are getting results from because the results came back 46XX normal female, that is me. I was so hurt and angry that this happened because I will never have peace in knowing what went wrong. A request for a cord blood sample was requested some time ago, it was put in my chart so my question is why did it not get done. My boyfriend already told me he did not want to know what went wrong because we were already told it had nothing to do with either one of us so if we wanted to have another child it would "probably" not happen again. I don't think I could live through losing another child so I feel not knowing will forever take away my chance for another child that I want so much. We all know how painful it is to lose our child but to add to that pain I have to life the rest of my life not knowing what went wrong. I already don't understand why God needed my child. I just feel like I'm going to die of a broken heart. WHY!

[calvin's mother]

unfortunatly none of us can answer those questions...But, someday I believe God will explain why. Why all the pain,lonely nites,empty arms and why was it my child. Of course I want to know right now but I have decided to let God come to me with his answers.I know you will never have peace knowing what went wrong. But try to find peace in the fact that you did everything right for Jarell.And he loves his mommy for taking such good care of him when he was with you.That is the only way I can get by day to day,knowing I did everything I could for Calvin. And I know he loves me.I will say a prayer for you and Jarell. HUGS

[asquad]

Trust me, Carissa, we do what we have to do to get us through. Not because we know what we're doing, not because we want to........just by GRACE. God is sovereign. "He has supremacy over all things and does what ever He desires with whomever or whatever He pleases." (Beth Moore, Daniel bible study) Back then I always wanted to be the one in control. I didn't want to feel this way or that...........I wasn't ready to be over being sad..........I had to learn to sit back and go with the ride and watch how He works. Look for things in my life that He's trying to teach me. Now, with this said, I did much better the 1st and 2nd times around and I'm still not 'there' yet after losing Aaron 4/06, but I am getting better.

Now after losing 3 angels, I am nervous about getting pg one last time but I feel in my heart that that's what God has planned for me and I know that I need another babe to focus my mind on to take away the focus of my loss. I've been there.

One of the many things I have learned to accept it this. I wanted to know WHY? WHY?? WHY??? I always knew one day I would know why, that day when I am with them, all 3. Pointblank being, when that day comes I WON'T CARE WHY anymore. Being there with no pain, no sadness, no sorrows.........pure bliss of holding my angels for eternity, being in the presence of our blessed Savior, I SIMPLY WON'T CARE, so why should I beat my self up holding onto those why's. HOW REFRESHING/STRESSLESS is that to know that I don't have to worry about it.

If I were there I would just hold you and cry with/for you-------for all of us here.

Please know that I prayed for you, I pray that there is someone you can share with, that God sends or has sent a true heart friend who you can let go with. It is TOUGH at first and please know that it does ease-----it never goes away but it will ease up.

(((((((((((((((((Heart HUGS to YOU!!!!)))))))))))))))))

[Erica Stone]

I'm so very sorry for you - I understand that this is an anxious and confusing time for you. I My husband and I didn't get any real answers, either. When things started going wrong with Matthew, the neonatologist tried to plug in his "symptoms" to find some sort of disorder or condition to explain what was going on. After the autopsy (there was SO much wrong with him) the answer we were given was that they couldn't match it to anything. There were a few things that were close, but not that matched everything. I didn't want to accept it at first, but he told me that it was actually "better" if there was no answer found. The reason being that statistically the odds were infinitely more favorable for a subsequent pregnancy. I have had another baby since (and was of course a nervous wreck the entire time) and it was a textbook pregnancy. I will never have an answer to what happened with Matthew and there's nothing I can do about that. We chose not to have genetic testing because they said it would be like "looking for a needle in a haystack" - they have to know what they're looking for to find anything. I'm sorry you're so upset. Please let me know if there's more I can do for you.

[carissa13]

The reason I am having such a hard time with this is because my sons identity was taken away from me. Because someone did not take a cord blood sample I have to wonder if my son is really my son. They can not tell me if the cells collected were true placenta tissue or my uterine cells that grew into the tissue. I was told that because the results came back 46xx normal female that if my boyfriend and I decided to have another baby that the possiblity of this happening again are very high. I want another baby someday more than anything but I can not bare the thought of this heartache again. Yes they offered to do genetic counciling to try to cover up the mistake. The results will never give me my son back but I feel they took away my hope for another child. We did not have an autopsy done so the one biopsy is the only one they have. It's just more hurt on top of my hurt I already have.
Thank you for your words of support, it does give me hope that I will just accept it someday. The things we can do nothing about tend to haunt us much more than the things we can do something about. I know someday it will be better but today it hurts so bad.

[Lyssa Sauer]

Carissa I am going to say something and its not what your gonna wanna hear. Honey, maybe its better you dont know either..maybe you arent suppose to know. God work in mysterious ways. I know with Payton they should have found his birth defect, every other doctor I have talked to has said they didnt see this in your ultrasound. For some reason God didnt want you to know. Hard to swallow yes I know I feel the same way you do We were jiffed! So my comfort is this I pray for your days to be better, you heart to be filled and your tears to be wiped away. May God hold you close and if you need someone to talk to feel free to call me 208-716-2362. With hugs Lyssa

[carissa13]

Thanks Lyssa, I do hear what you are saying and trust me, I try to always remember that God makes no mistakes and sometimes we will not understand the "whys" of life. I guess it's so fresh right now and I feel I would have gotten the answer I was looking for if someone took the cord blood. But each day it gets easier, my tears are less and I go back to just cherishing my good memories of my beautiful son. I do appreciate all the words of support that all of you give me. Sometimes I just need someone to listen.

[Lyssa Sauer]

Sometimes I just need someone to listen.[/quote]
Trust me I know Ihave done plenty of my own venting and whys and even just reading. But I do honestly know how you feel in this department. For me thou it is if the doctors would have found his defect chances are Payton would still be here..But then two if he wasnt suppose to be here he wouldnt. God could have saved Payton that day if that was Gods plan. Doesnt mean I dont struggle with the what could have and might have beens.. My thoughts and prayers are with in so comfort and peace. Like I said if you need to talk call me I am a good listener! Lyssa

[Lindzy Foster]

carissa i am so sorry that you have been struggling so much, and that they were unable to give you the answers you needed,i have to share that with Kaydence we knew at 20 weeks that she had a congenital heart defect, but after she was born we found out that even after all the specialists we saw with their high-tech machines they still didnt catch her major defect which was Transposition of the Great Arteries, and of course they dont know what causes CHD's, there is alot of speculation but no definate answers...they say that our chances are only slightly increased that we would have another CHD baby, we want another baby so badly but are so afraid of what might happen, i cannot get over my fear yet....as far as answers for Kaydences death we did have an autopsy performed on only her heart and lungs, we were hoping they would be able to tell us why when the surgery was successful in their eyes would our little girls heart not beat on its own...and we did get some answers, this is the first time i am posting about the results as i am having a hard time still coming to terms with what our surgeon told us...the autopsy found that during her first surgery when doing the switch to correct her TGA, when placing her coronary's back in position, the one that connects to the backside of her left ventricle was torn which caused blood to pool between its layers and effectively close off that coronary enough that the restricted blood flow was not enough for her left ventricle to pump and caused blackening or necrosis of the heart(mini heart attacks) which is why when they tried to take her off the ECMO her heart would not beat...so they kept her on ECMO to try and figure out why not knowing about the tear as it was in backside of heart and hard to detect with the equipment so being on the ECMO and not being able to clot her blood she hemorhagged in her heart and lungs, the tiniest scratch caused major hemorhagging...the surgeon looked me in the eyes and told me that he believes he was responsible for the tear in her coronary and that maybe if he had been more careful or placed them differently she would still be alive....i felt alot of anger, and helplessness, but since then i have had time to think about it and i go back and forth on my feelings about what he said, i could see in his eyes that he blames himself, he had to hold back tears as he was telling us, but he is only human, and Kaydence was a small baby with tiny tiny coronarys, yes i wish it could be different, but it was a hard area to work on to start with, the backside of your heart, and he worked so hard to save her life, spent days at the hospital, slept there just to be near incase he was needed, he showed us so much compassion and being angry with him will not bring her back, i have to believe that God has his reasons and pray that someday i will know them...im sorry to have went on for so long with this post...i guess i am trying to say that even when you do get some answers to questions you have, they may not be anything you want to hear, because while it is comforting to know some of what we learned with the autopsy it has for us only brought up more what ifs? but that is just us, i know i cannot speak for anyone else and things they have learned about their childs deaths, i just thought i would share how some of our answers turned out....i wish you and your family Carissa some peace and comfort, i hope that i have made some sense in what i wrote here...