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Rank: Administration
Groups: Administration
Joined: 12/18/2007
Posts: -2
Points: -229
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We invite you to write about your child here.
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Rank: Newbie
Groups: Member
Joined: 7/11/2008
Posts: 1
Points: 3
Location: South Jersey
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Hello...heres a post I wrote on Cafemom.com a few days after my son passed...
On Jan 13th I went into labor, my c-section wasnt until Jan 24th, but my son Tristen decided he wanted to come early......Early in my pregnancy doctors told us that he would be born with skeletal dysplasia, but they didnt know what the outcome would be, so they watched and measured him monthly, but his growth was lagging behind and his chest cavity wasn't growing at all....so on my very last sonogram, the doctor told me that because his chest was so small, breathing would be difficult for him....I prayed to god about this through out the whole pregnancy, but when they told me this..I prayed god to not let him suffer.....if he was gonna take my baby then i wanted god to take him quickly.....so when Tristen came out, I prayed for him the breath..but the room was so quiet.....nurses later told me that he came out trying to breath...but he just couldnt, they tried putting the tubes down his throat to help him breath but his chest cavity was too small....they told me he still had a heart beat but it was getting weak....thats the hardest pill i every had to swallow....even though we knew he was sick and this might happen....it doesnt hit you until it happens......the nurses put his warm soft face against mine...and he gurlged a little on me...I quess he knew it was mommy.....he passed shortly after, nurses let us spend as much time with him as we wanted to....we hugged him, kissed him, and let him know we loved him, nurses even bathed him for us and let my fiance but his outfit on...we took pictures and just spent time loving our son.....about 4 hrs later...we told them it was ok to take him away.....even though it hurt, I knew I couldnt keep him forever......its not a day that goes by that i dont cry for Tristen, I know its gonna be a long recovery, but I know god is looking after him....I will never forget my son....I was always be his mother....we will celebrate his birthday every year......we are having an autopsy done on him, and afterwards they will cremate him for us.......we plan on trying again in about 6 months...wanna give my body time to heal from the c section, but I always heard how hard it was to say goodbye to your children....just never thought that I would experience it.....hope to god we never go through it again.......it hurts so bad.....to carry a baby for 9 months and bond with him or her.....they say the heart heals in time..and we are taking it one day at a time.....we will forever love and miss Tristen Immanuel Martin
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Rank: Newbie
Groups: Member
Joined: 3/24/2008
Posts: 5
Points: 15
Location: Iowa
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Hello, my name is Katie. I am so sorry to hear of your loss, but how lucky you were to have that precious time with Tristen when he was born. I hope you can find answers to your son's skeletal dysplasia. I lost two daughters to SRPS type ll, which means their chest, long arm and leg bones do not grow. It's a fatal disorder because the chest does not allow the child a chance to breath. The first time around the Drs. didn't know what they were looking at and never gave us a lot of answers or a true diagnosis. Shortly after we were introduced to Dr. Krakow at Cedars-Sinai in California. I pray that you find peace and answers on your journey of mourning and healing. Thank you so much for sharing with us and please let us know what the autopsy shows.
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Rank: Newbie
Groups: Member
Joined: 9/30/2008
Posts: 1
Points: 3
Location: Illinois
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My name is Amy, I lost my daughter to SRPS in June of 2008. My husband and I had 45 amazing minutes with our daughter. Our full story is posted at www.lovinglittleleah.blogspot.com. We were not diagnosed with SRPS until after Leah was born, although we did know that she had some form of lethal skeletal dysplasia. I was so glad to find out about this website from Cedars, because it has been difficult to learn about SRPS on the web. Does anyone know of any other good web resources about either SRPS or lethal skeletal dysplasia? Thanks! Amy
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Rank: Newbie
Groups: Member
Joined: 10/8/2008
Posts: 1
Points: 3
Location: Alabama
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Hello everyone. I'm Mary. My husband and I lost our son, Anakin, on June 1st. He was 34 days old. He was born with Thanatophoric Dysplasia Type 1 at 41 weeks on April 28th. We had no idea there was anything wrong until he was born via c-section. We had no idea there were even such things as lethal skeletal dyplasias. His website is http://anakinssong.com. Feel free to read all about my baby boy. The site includes everything from my pregnancy, his birth, his life, his death, our reflections, information about the memorial we started, etc... We've been to see a geneticist. He assures us that TD is 99.9999% random and the chances of our future children having TD is <.00000001%. We had read and heard that before but I needed to hear it from an expert. Since having Anakin, I have talked to several families with children that had/have TD. It has been a comfort to talk to others who understand, especially those who've had more children who were perfectly healthy. It's been just over 4 months since we lost Anakin. We feel every second of it, but we're surviving.
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Rank: Newbie
Groups: Member
Joined: 3/30/2008
Posts: 3
Points: 9
Location: St Pete, FL
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Hi Mary, It is a very sad welcome to this group. I am glad you found it. This foundation has been such a help to our family over the past year. I was just reading Anakin's stories on your website. It is such a beautiful memorial to your son. I am so glad he was able to be home with you and your husband. Our son Jake had a form of skeletal dysplasia called SRPS and passed away 3/16/07 just after he was born and our son Ethan had PUV and was stillborn on 8/25/08. If you need to talk, I am here, my email is mandy_roberts20@Hotmail.comHugs to you and your family, Mandy
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Rank: Newbie
Groups: Member
Joined: 10/19/2008
Posts: 1
Points: 3
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Hello everyone,
My name is Barb, and I would like to tell my story as a grandmother. My grandson is Luca John. I know the pain of losing a grandchild so I can only imagine the pain of losing a child. Nov.10th, 2006 is a day I will never forget. I was with my daughter and my son-in-law when Luca was born. I never felt so helpless as I did that day, watching my child and her husband go through the pain and the tragedy of losing there son. The Doctors said he would probably not be born alive but the were wrong. Luca lived for an hour and a half and he gave us a life time of love in that short time. His loving parents, both sets of grandparents, his uncles and aunt were all with him when he passed, and I know he felt our love for him as well. They say that out of every tragedy some good must come. Luca is honored everyday by is parents who immediately started the Luca John Foundation so that they could help others who have lost a child to Skeletal Dysplasia. Watching my daughter and son-in-law go through this with there faith and love for each other has taught me a great deal. Luca has two healthy and beautiful brothers who we are so blessed to have in our lives. They will grow up knowing they have an angel up above watching over them. So as a Grandmother who loves her little angel as all of you love your children, I pray to God that through research we can one day find the gene code that is responsible for Skeletal Dysplasia. Until then, we will fight to stay strong. My thoughts and prayers go out to you all. To my son-in-law and daughter I love you and gain strength from you everyday.
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