tag:blogger.com,1999:blog-2532607975058218460.post8767762155226411605..comments2024-03-18T22:47:05.420-05:00Comments on Buttons and Butterflies: Thanatophoric DysplasiaHeidi Grohshttp://www.blogger.com/profile/00037618884442987553noreply@blogger.comBlogger77125tag:blogger.com,1999:blog-2532607975058218460.post-57759248689226750502022-04-11T11:13:47.904-05:002022-04-11T11:13:47.904-05:00Thank you for another informative web site. Where ...Thank you for another informative web site. Where else could I get that type of information written in such a perfect way? I have a project that I am just now working on, and I’ve been on the look out for such information.<a href="https://thesportsdaily.com/2021/03/25/how-much-does-a-home-gym-cost/" rel="nofollow">read here</a>Adamhttps://www.blogger.com/profile/14851287719228320307noreply@blogger.comtag:blogger.com,1999:blog-2532607975058218460.post-85215796372366947302021-01-21T02:44:24.554-06:002021-01-21T02:44:24.554-06:00Do you need an urgent loan of any kind? Loans to l...Do you need an urgent loan of any kind? Loans to liquidate debts or need to loan to improve your business have you been rejected by any other banks and financial institutions? Do you need a loan or a mortgage? This is the place to look, we are here to solve all your financial problems. We borrow money for the public. Need financial help with a bad credit in need of money. To pay for a commercial investment at a reasonable rate of 3%, let me use this method to inform you that we are providing reliable and helpful assistance and we will be ready to lend you. Contact us today by email: daveloganloanfirm@gmail.com Call/Text: +1(501)800-0690 And whatsapp: +1 (315) 640-3560<br /><br />NEED A LOAN?<br />Ask Me.Unknownhttps://www.blogger.com/profile/02242961664912712828noreply@blogger.comtag:blogger.com,1999:blog-2532607975058218460.post-10264453427839825552021-01-03T10:51:52.157-06:002021-01-03T10:51:52.157-06:00To know, that in a very short (earthly) life - all...To know, that in a very short (earthly) life - all you have known is pure love! How special is that?Sandy Cainhttps://www.blogger.com/profile/00158731077362372875noreply@blogger.comtag:blogger.com,1999:blog-2532607975058218460.post-15423992229932800642020-10-17T00:16:57.312-05:002020-10-17T00:16:57.312-05:00Our daughter, Hannah Rose, was born on April 30, 1...Our daughter, Hannah Rose, was born on April 30, 1992. She lived here for 38 minutes and lives now in Heaven, healed completely. Healed not because she had dwarfism but a fatal form of dwarfism. Please feel free to reach out anytime. <br />"Awaiting the touch of a little hand and the smile of a little face..."❤❤❤❤❤<br />Anonymoushttps://www.blogger.com/profile/04910946788948071175noreply@blogger.comtag:blogger.com,1999:blog-2532607975058218460.post-20946972958648655962018-04-26T18:49:24.494-05:002018-04-26T18:49:24.494-05:00Hi!
My story is a lot different as we didn't ...Hi! <br />My story is a lot different as we didn't carry full term. We got the diagnosis of Thanatophoric dysplasia 1. We were told it was lethal and our little guy had several skeletal malformations. We decided to end our pregnancy. It was the only decision for us as we knew the outcome. Again, I know my story is vastly different. I can't offer you the answer you've been looking for. I just wanted to tell you that you're not alone in this journey. <br /><br />Good luck.Anonymoushttps://www.blogger.com/profile/15817176862349573954noreply@blogger.comtag:blogger.com,1999:blog-2532607975058218460.post-42891741909241888422018-04-26T00:06:58.270-05:002018-04-26T00:06:58.270-05:00Hello,
I am a mom of angel baby. Our son was born...Hello,<br /><br />I am a mom of angel baby. Our son was born into heaven on April 4th. We found out at our 14 week scan that there were significant issues with his long bones. We went through an enormously tough time and just like many of the moms here find themselves as parents without a baby. We got the diagnosis of TD1 tonight from our geneticist. I had been struggling so much, but for some reason hearing the name gave my heart a small bit of piece. There is finally a name for this horrible thing that took my son away from me. I am worried that our future children may be affected; however, our doctor has led us to believe that while there is always a chance for something to go wrong, there is a low chance of TD1 occurring again. This was our first baby and we miss him already. Hopefully in the future we will be able to grow our family, but for now it's bit daunting to think of the possibilities. <br /><br />My heart goes out to all the moms and families on here dealing with this. What an awful thing to have in common. I'm so glad I found this link. Any advice in getting back on track in even thinking about trying to have a baby would be helpful. Good luck to everyone out there. <br /><br />-Crys <br />Garden Grove, CAAnonymoushttps://www.blogger.com/profile/15817176862349573954noreply@blogger.comtag:blogger.com,1999:blog-2532607975058218460.post-37541920854562464152018-03-13T14:01:01.823-05:002018-03-13T14:01:01.823-05:00Heidi and all ladies who shared their stories here...Heidi and all ladies who shared their stories here. As many, just found this blog whilst researching. Thank you all so much, just reading your stories here truly gives a lot of inspiration and support. In my case the diagnosis came during my initial genetic NT screening on week 16 and had been confirmed later on week 20, however, till now I have not been confirmed on what TD type my baby is having. And as many here, I have never heard of this condition before, and was not even aware that it has "types". <br />I can see the last comment was posted a year and half ago, but still hope if anyone would read this. I have a question to those who made the decision to carry "full" term no matter what, as this is what I opted to by myself. I am currently in week 22, and it is so hard to believe as my son is so active, he is all turning and moving in my womb, kicking and doing all those things that any other baby would normally do (I have an older child who is now 2.5 years, completely healthy, so judging from my first experience). So, did any of you feel anything weird during your pregnancy that would trigger your gut feeling that there might be something wrong and made it a bit easier to come to terms with the condition? I might still be in denial stage, but it feels so surreal to accept the baby's condition while he is so active! His heartbeats are very strong, my genetic screening came all normal, even that it is chromosomal rather than single gene. I know there are all those images and measurements... Not that I am trying to cling to the false hopes or convince myself that this is a misdiagnosis, it is just too hard to accept the reality. <br />And my next question would be how many ultrasounds did you have before labor and how further management looked like? As Heidi mentioned, at time of my appointment with genetics specialist and perinatologist they rushed with their recommendations to terminate without giving me even a second of thought on how it would be should I continue, I was so shocked that the idea of keeping my pregnancy no matter what occurred only a week later... I am so relieved to know that if my termination appointment would have been booked at least a couple of days earlier, I would not have been given a chance to continue. <br />So, after my second appointment with them, they told me the condition has been confirmed, they don't see any other reason for making other ultrasounds, therefore their job is done and any other tests would be at my OBGYN's choice. I find this approach rather strange, especially after reading all stories online where moms shared how extensive and careful they have been screened and cared after... I am in Canada and yet with all medical services being mostly free, I feel there should be a little more... At least to watch the progress??? Am I wrong??? Would be grateful if anyone could share their experience... and if there is anyone from Canada... Hopefully this message will reach someone... thank you so much!Anonymoushttps://www.blogger.com/profile/03778315243290529626noreply@blogger.comtag:blogger.com,1999:blog-2532607975058218460.post-20556511320988940212016-12-02T21:52:05.619-06:002016-12-02T21:52:05.619-06:00There is a great group (closed) on Facebook: Thana...There is a great group (closed) on Facebook: Thanatophoric Dysplasia Support GroupAnonymoushttps://www.blogger.com/profile/07346516921712535911noreply@blogger.comtag:blogger.com,1999:blog-2532607975058218460.post-17800772523964654042016-10-05T10:13:34.266-05:002016-10-05T10:13:34.266-05:00Heidi,
We had a son born November 19th, 1997 with ...Heidi,<br />We had a son born November 19th, 1997 with TD1. As with most others he was diagnosed at 24 weeks through ultrasound. Doctors immediately sent us for a consult to help us decide on a "plan for the pregnancy". We are devout Christians and there was no way that I could terminate the pregnancy and am so glad that we did not. I carried him to 39 weeks when I was induced at Baptist Hospital in Memphis, TN. Our beautiful baby boy was born early on November 19th and we took him home two days later. All of our family gathered around us and we were able to love our baby boy until around 10am on November 24th. He was a little over 5 days old. It was definitely worth it! We had a daughter who was three at the time and went on to have a healthy son 2 years later. It was definitely the hardest thing we have ever faced, but we have so many precious memories!Lorihttps://www.blogger.com/profile/13721348098276681344noreply@blogger.comtag:blogger.com,1999:blog-2532607975058218460.post-69241224592576889212016-03-23T12:47:02.045-05:002016-03-23T12:47:02.045-05:00Good day!
My name is Angelyn Albay and I'm fr...Good day!<br /><br />My name is Angelyn Albay and I'm from the Philippines. I have read several of your blogs regarding thanatophoric skeletal dysplasia on Google. I'm seeking for people who's the same case as mine. January 18, 2016 in my 20weeks pregnancy I was diagnosed to have a multiple congenital anomaly specifically the case of TD. The doctor explained it to us that this is a very rare case that happens in every 1:20,000 live births and this is also fatal. We don't have history of this case in both of our families. This is actually our second baby. Our first baby was almost the same case with the second. Both diagnosed to have hypomineralized cranium, hypoplastic nasal bone, narrow thoracic cage, marked shortened and deformed long bones. It was heart breaking for I and my husband are expecting to have a healthy baby for the second time around. Since our country is a<br />Catholic nation, our doctors suggest to let us treat my pregnancy as a normal one. I continue taking my vitamins and milk. Regular check up every month and almost every week. On my 28th week I was diagnosed to have a gestational diabetes which lead us to a more careful diet. Hoping and praying for miracle, we continue treat my pregnancy as healthy as we can. March 17, 2016 is my follow up with the OB. Same day the doctor said that they cannot appreciate the heartbeat of my baby and we need to have a pelvic ultrasound to check it more accurately. My heart is beating so fast, acting as strong as I can. In that moment my husband is working and I don't want to give him such news. He is praying for a miracle for our baby and I don't want to broke his heart. Preparing my self for the worst case scenario, I call my husband and told him to went in the hospital as soon as he can. We prayed together that God will give us strength and never lose our faith. March 18, 2016 after almost 13hours of labor at 9:50 am I normally deliver to a baby girl. She's 30 weeks and 2 days old. Stillbirth. That day is the most quite time of our life. Throwing back all the Happy memories in my entire pregnancy in my mind. I still thank God for I am safe and baby is back our heavenly Father. We buried our little angel's body last March 20, 2016. In my recovery stage, I'm still praying and hoping to find help for we still wanted to have a baby that will complete us. In reading your blog, I have so much questions if we can still conceive another healthy baby for the third time. In our country, health is being prioritize by the government but in such rare cases we don't know if they have researches or organization that will going to help us. We hope that this message will reach you. Thank you.<br />angelynalbay@yahoo.com <br />Anonymoushttps://www.blogger.com/profile/16818148600055207752noreply@blogger.comtag:blogger.com,1999:blog-2532607975058218460.post-24425046121214207582016-03-23T12:46:40.874-05:002016-03-23T12:46:40.874-05:00Good day!
My name is Angelyn Albay and I'm fr...Good day!<br /><br />My name is Angelyn Albay and I'm from the Philippines. I have read several of your blogs regarding thanatophoric skeletal dysplasia on Google. I'm seeking for people who's the same case as mine. January 18, 2016 in my 20weeks pregnancy I was diagnosed to have a multiple congenital anomaly specifically the case of TD. The doctor explained it to us that this is a very rare case that happens in every 1:20,000 live births and this is also fatal. We don't have history of this case in both of our families. This is actually our second baby. Our first baby was almost the same case with the second. Both diagnosed to have hypomineralized cranium, hypoplastic nasal bone, narrow thoracic cage, marked shortened and deformed long bones. It was heart breaking for I and my husband are expecting to have a healthy baby for the second time around. Since our country is a<br />Catholic nation, our doctors suggest to let us treat my pregnancy as a normal one. I continue taking my vitamins and milk. Regular check up every month and almost every week. On my 28th week I was diagnosed to have a gestational diabetes which lead us to a more careful diet. Hoping and praying for miracle, we continue treat my pregnancy as healthy as we can. March 17, 2016 is my follow up with the OB. Same day the doctor said that they cannot appreciate the heartbeat of my baby and we need to have a pelvic ultrasound to check it more accurately. My heart is beating so fast, acting as strong as I can. In that moment my husband is working and I don't want to give him such news. He is praying for a miracle for our baby and I don't want to broke his heart. Preparing my self for the worst case scenario, I call my husband and told him to went in the hospital as soon as he can. We prayed together that God will give us strength and never lose our faith. March 18, 2016 after almost 13hours of labor at 9:50 am I normally deliver to a baby girl. She's 30 weeks and 2 days old. Stillbirth. That day is the most quite time of our life. Throwing back all the Happy memories in my entire pregnancy in my mind. I still thank God for I am safe and baby is back our heavenly Father. We buried our little angel's body last March 20, 2016. In my recovery stage, I'm still praying and hoping to find help for we still wanted to have a baby that will complete us. In reading your blog, I have so much questions if we can still conceive another healthy baby for the third time. In our country, health is being prioritize by the government but in such rare cases we don't know if they have researches or organization that will going to help us. We hope that this message will reach you. Thank you! <br />angelynalbay@yahoo.com <br /><br />Anonymoushttps://www.blogger.com/profile/16818148600055207752noreply@blogger.comtag:blogger.com,1999:blog-2532607975058218460.post-73511801043999997882016-03-23T12:45:31.393-05:002016-03-23T12:45:31.393-05:00Good day!
My name is Angelyn Albay and I'm fr...Good day!<br /><br />My name is Angelyn Albay and I'm from the Philippines. I have read several of your blogs regarding thanatophoric skeletal dysplasia on Google. I'm seeking for people who's the same case as mine. January 18, 2016 in my 20weeks pregnancy I was diagnosed to have a multiple congenital anomaly specifically the case of TD. The doctor explained it to us that this is a very rare case that happens in every 1:20,000 live births and this is also fatal. We don't have history of this case in both of our families. This is actually our second baby. Our first baby was almost the same case with the second. Both diagnosed to have hypomineralized cranium, hypoplastic nasal bone, narrow thoracic cage, marked shortened and deformed long bones. It was heart breaking for I and my husband are expecting to have a healthy baby for the second time around. Since our country is a<br />Catholic nation, our doctors suggest to let us treat my pregnancy as a normal one. I continue taking my vitamins and milk. Regular check up every month and almost every week. On my 28th week I was diagnosed to have a gestational diabetes which lead us to a more careful diet. Hoping and praying for miracle, we continue treat my pregnancy as healthy as we can. March 17, 2016 is my follow up with the OB. Same day the doctor said that they cannot appreciate the heartbeat of my baby and we need to have a pelvic ultrasound to check it more accurately. My heart is beating so fast, acting as strong as I can. In that moment my husband is working and I don't want to give him such news. He is praying for a miracle for our baby and I don't want to broke his heart. Preparing my self for the worst case scenario, I call my husband and told him to went in the hospital as soon as he can. We prayed together that God will give us strength and never lose our faith. March 18, 2016 after almost 13hours of labor at 9:50 am I normally deliver to a baby girl. She's 30 weeks and 2 days old. Stillbirth. That day is the most quite time of our life. Throwing back all the Happy memories in my entire pregnancy in my mind. I still thank God for I am safe and baby is back our heavenly Father. We buried our little angel's body last March 20, 2016. In my recovery stage, I'm still praying and hoping to find help for we still wanted to have a baby that will complete us. In reading your blog, I have so much questions if we can still conceive another healthy baby for the third time. In our country, health is being prioritize by the government but in such rare cases we don't know if they have researches or organization that will going to help us. We hope that this message will reach you. Thank you! <br />angelynalbay@yahoo.com <br /><br />Anonymoushttps://www.blogger.com/profile/16818148600055207752noreply@blogger.comtag:blogger.com,1999:blog-2532607975058218460.post-46157927898720236462016-03-23T12:42:34.216-05:002016-03-23T12:42:34.216-05:00Good day!
My name is Angelyn Albay and I'm fr...Good day!<br /><br />My name is Angelyn Albay and I'm from the Philippines. I have read several of your blogs regarding thanatophoric skeletal dysplasia on Google. I'm seeking for people who's the same case as mine. January 18, 2016 in my 20weeks pregnancy I was diagnosed to have a multiple congenital anomaly specifically the case of TD. The doctor explained it to us that this is a very rare case that happens in every 1:20,000 live births and this is also fatal. We don't have history of this case in both of our families. This is actually our second baby. Our first baby was almost the same case with the second. Both diagnosed to have hypomineralized cranium, hypoplastic nasal bone, narrow thoracic cage, marked shortened and deformed long bones. It was heart breaking for I and my husband are expecting to have a healthy baby for the second time around. Since our country is a<br />Catholic nation, our doctors suggest to let us treat my pregnancy as a normal one. I continue taking my vitamins and milk. Regular check up every month and almost every week. On my 28th week I was diagnosed to have a gestational diabetes which lead us to a more careful diet. Hoping and praying for miracle, we continue treat my pregnancy as healthy as we can. March 17, 2016 is my follow up with the OB. Same day the doctor said that they cannot appreciate the heartbeat of my baby and we need to have a pelvic ultrasound to check it more accurately. My heart is beating so fast, acting as strong as I can. In that moment my husband is working and I don't want to give him such news. He is praying for a miracle for our baby and I don't want to broke his heart. Preparing my self for the worst case scenario, I call my husband and told him to went in the hospital as soon as he can. We prayed together that God will give us strength and never lose our faith. March 18, 2016 after almost 13hours of labor at 9:50 am I normally deliver to a baby girl. She's 30 weeks and 2 days old. Stillbirth. That day is the most quite time of our life. Throwing back all the Happy memories in my entire pregnancy in my mind. I still thank God for I am safe and baby is back our heavenly Father. We buried our little angel's body last March 20, 2016. In my recovery stage, I'm still praying and hoping to find help for we still wanted to have a baby that will complete us. In reading your blog, I have so much questions if we can still conceive another healthy baby for the third time. In our country, health is being prioritize by the government but in such rare cases we don't know if they have researches or organization that will going to help us. We hope that this message will reach you. Thank you.<br />angelynalbay@yahoo.com <br />Anonymoushttps://www.blogger.com/profile/16818148600055207752noreply@blogger.comtag:blogger.com,1999:blog-2532607975058218460.post-56156874939250666092016-02-22T04:57:20.306-06:002016-02-22T04:57:20.306-06:00Только ваш рассказ позволил мне успокоиться...Так ...Только ваш рассказ позволил мне успокоиться...Так как ваша история изложена с такой любовью...Ваш рассказ отличается от моей истории, только полом ребенка. Все идентично. 9 июня 2015г., через два дня после своего дня рождения я родила мальчика Кристиана, танатофорная дисплазия...Anonymoushttps://www.blogger.com/profile/05656807876952903252noreply@blogger.comtag:blogger.com,1999:blog-2532607975058218460.post-67575681025445627992015-12-21T14:46:08.941-06:002015-12-21T14:46:08.941-06:00Thanks for your awesome, informative post. My wif...Thanks for your awesome, informative post. My wife is 20 weeks pregnant and our child was diagnosed as having Thanatophoric Dysplasia. It is our first pregnancy and we were prompted by the doctors several times on our "plan for the pregnancy." We have said from the beginning that we will go forward with the pregnancy no matter what. It is helpful to read about the information you gathered and your experience. This has been a tough experience to go through especially during the holidays. We were at Christmas parties this weekend and everyone was asking us about the baby and pregnancy... I will share this info with my wife tonight. Thanks again... and blessings to you! Joshhttps://www.blogger.com/profile/07129046252977841359noreply@blogger.comtag:blogger.com,1999:blog-2532607975058218460.post-44336079217611617922015-09-10T14:30:22.637-05:002015-09-10T14:30:22.637-05:00Hi there, we'll our story starts with my young...Hi there, we'll our story starts with my youngest daughter, who had 1 normal healthy baby boy, after 5 yrs of trying finally my daughter finds out she is PREGNANT, O how wonderful. This will make grandbaby number 7!! <br />She develops some bleeding a few weeks in and is told she has some kind of hematoma, ultra sounds show a healthy fetus so far.. so she goes on with her pregnacy, and is passing out, not feeling at all well. So they take her off work very early in her pregnancy. <br /> Two days ago sept 8th 2015, we were over jotted to find out she was getting her Lil girl she wanted. <br /> After we were Givin such amazing news! <br /> She gets a diagnosis of TRISOMY13. Omg what is that??? We research everything on it for 24hrs, then we are rushed to a bigger city bigger hospital and more genetic drs. <br /> Ultra sound again, to find out baby Mary does not have trisomy13, but a vary rare dwarfism. Ok we can live with that! Well it's type 2 ugh the lethal one. She is alive in mommy's tummy, but can't survive outside :( <br /> 2 choices were given to my daughter . Heart WRENCHING! TO DAY THE LEAST. The two hour car ride home was so quit u could have heard a pun drop.<br />As I sit in the middle seat of the mini van, I look back and see my beautiful daughter had cred herself to sleep on her husband's lap. She looked so young 25 and peaceful but even through the sleeping look u could see the stress pouring out. The sadness seeping from every pour in her skin.<br /> I quietly cried tears for her. And remembered the day I held her for the first time. And the joy I felt. <br />Now, she had choices to make NO MOTHER SHOULD EVER have to choose <br /> Induce at a lil over 23-24weeks or hold out and keep feeling her baby move and growing inside her. Until January 16th or so her due date.<br /> I came in my house dropped my purse fell too knees and beat the floor, and then stood up starting to make the calls to family and friends. <br />Finally got some sleep after hrs and hrs of seeing the scans whenever I closed my eyes.<br /> Woke up this morning with swollen eyes the heaves heart and more tears. <br /> My husband works the graveyard shift, he came home with a pc of paper with a name written on it for portraits if her and her baby when she makes her choice. <br /> I call her and explain the portrait thing. And do ypu know my beautiful Daughter told me????? <br />She made her choice!!! She is carrying Mary to term and letting God take it from there. !!! I have never in my life been prouder of anyone of my 4 children! <br /> My Youngest daughter just showed me how to love bigger than anyone one mom I've ever known!!!!! <br /> So in January 2016 I will be made a gramma of 7 and the proudest mother in the world right now<br />Anonymoushttps://www.blogger.com/profile/09413924501567324332noreply@blogger.comtag:blogger.com,1999:blog-2532607975058218460.post-1564684977333874222015-08-10T03:53:13.121-05:002015-08-10T03:53:13.121-05:00This comment has been removed by the author.Zsókahttps://www.blogger.com/profile/01955618827791143488noreply@blogger.comtag:blogger.com,1999:blog-2532607975058218460.post-7442888633119051222014-09-26T17:34:56.370-05:002014-09-26T17:34:56.370-05:00Hi Melinda, I am going through the same issues now...Hi Melinda, I am going through the same issues now i am 32 weeks and have had all the testing that is possible and still no answers. I was hoping you could tell me what came of your situation. everything you describes is basically the same in my situation they thought initially that it was not the TD due to everything else looking non lethal however now they are concerned due to the cloverleaf shape of the skull, every time i seem to go to the doctor it is more bad news i am trying to stay positive however it is very difficult. i also have been diagnosed with 2 placentas, recent kidney stones, and cysts on both of my ovaries also, Preeclampsia and diabetes, on top of worrying about my precious daughter inside i now have my own health risks i am dealing with i just don't know what to do anymore. i keep praying but it is very difficult to see the light at the end of this tunnel. Anonymoushttps://www.blogger.com/profile/00161611781926379985noreply@blogger.comtag:blogger.com,1999:blog-2532607975058218460.post-45481535283307982202013-07-18T10:30:15.327-05:002013-07-18T10:30:15.327-05:00This comment has been removed by the author.little angelshttps://www.blogger.com/profile/11191910028877372433noreply@blogger.comtag:blogger.com,1999:blog-2532607975058218460.post-50058624113773393352013-07-18T10:24:19.969-05:002013-07-18T10:24:19.969-05:00Hi. My little demi was born 5th July 2013 . She wa...Hi. My little demi was born 5th July 2013 . She was diagnosed with td at 20 week scan . I had my labour induced at 21 weeks . I couldn't go to full term it was too painful for me . She was born . It took every bit of courage I had and took her into my arms . The shock went the love came .the peace and sorrow I felt was unbelievable . She was perfect in every way to me I was her mum . She was 20 cms long and weighed 12 oz . We have little demi funeral next week . I feel for every single mummy here . You are not alone . Bless all the little angels . Thankyou for all your story's they have helped me so much . little angelshttps://www.blogger.com/profile/11191910028877372433noreply@blogger.comtag:blogger.com,1999:blog-2532607975058218460.post-10112666736141560442013-04-06T00:24:25.330-05:002013-04-06T00:24:25.330-05:00I just lost my daughter on 2/24/13 to Thanatophori...I just lost my daughter on 2/24/13 to Thanatophoric Dysplasia Type 2. Like all the other women on here, I am so grateful to have found a place to come and read about other experiences that are so similar to mine. In such a trying time, it is comforting to know I am not alone and that so many other wonderful people have found a way to move on. Thank you so much for starting such an inspiring blog to bring us together. Jasminehttps://www.blogger.com/profile/10358268476144235144noreply@blogger.comtag:blogger.com,1999:blog-2532607975058218460.post-65726343187856916872012-12-11T00:36:41.559-06:002012-12-11T00:36:41.559-06:00Thinking of you Melinda!!! Thinking of you Melinda!!! Heidi Grohshttps://www.blogger.com/profile/00037618884442987553noreply@blogger.comtag:blogger.com,1999:blog-2532607975058218460.post-80428390856673058602012-12-02T16:56:45.858-06:002012-12-02T16:56:45.858-06:00Hi! I loved the beautiful pictures and your story....Hi! I loved the beautiful pictures and your story. My daughter is due Dec. 29th. Her perinatologist has also advised a C-section since Waylon is also breech. We know that he has some type of skeletal dysplasia...My daughter had an US at 20 weeks and we were able to find out that it is a boy. I was a little apprehensive...I am a nurse too...and with the quietness in the room, I just KNEW something wasn't right. Her doctor's nurse called that afternoon to give her the news OVER THE PHONE that the baby wasnt growing right and she needed to see a specialist. Waylon's long bones have measured less than 2.3% thru the entire pregnancy. We were told to expect fetal demise or stillbirth. Our long bone to head circumference or abdomen ratio was .138~and anything less than .16 is considered fatal. Femur bones looked bowed, possible fracture but they didn't think it was. One perinatologist said his throax looked bell-shaped but the other 2 doctors said they didn't think so. Searching skeletal dysplasias online kept leading back to TD. My daughter had already said she wouldn't consider terminating the pregnancy...so their advice was~ it doesn't look good "but don't panic yet". She did an amnio...which screened for Syndromes like Trisomy 13, 18 and 21, and chromosomal disorders. We were told they would test for dysplasias also. My daughter went back in for labwork and an achondroplasia panel was done. It was also negative. After reading online that most find out about Thanatophoric Dysplasia thru amnio, I asked why this wasn't done and was told that in our area...North Louisiana...the reference lab no longer runs this panel. So, we are waiting and waiting...and waiting. The last measurement showed a straight femur....a healthy looking chest and good attempts at breathing. All long bones are still measuring short~ less that 2%...but we did see a foot up by the mouth on ultrasound...so we are wondering if they are as short as we are being told??? We still believe in miracles...and are hoping that if this is Thanatophoric Dysplasia that God has done some amazing healing. We have a genetics visit this week with Dr Harold Chin. He has published several books on skeletal dysplasias and is an expert in this area. Just wanted to give a word of encouragement to those who may not be able to get a definitive diagnosis (thru labwork) during pregnancy...don't give up hope! I will let you know what we find out. Remember your doctors are giving you their best guess based on their knowledge...but it's only science. God has the final say and regardless of the outcome...we have seen miracles just thru our experience so far. Hugs and prayers to all going thru this experience! MelindaAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-2532607975058218460.post-25274536655320577562012-11-09T17:42:40.835-06:002012-11-09T17:42:40.835-06:00I am 23 weeks pregnant and a couple of weeks ago f...I am 23 weeks pregnant and a couple of weeks ago found out my baby has been diagnosed with TD. I have since had an amnio to confirm this. I am in shock and denial at the same time. I have a healthy 6 year old daughter and my husband and I are were so excited to finally add to our family. Now we face the hardest decision of our lives. I am unsure if I can actually wait till the end to deliver as I feel the baby moving inside me. Then on the other hand the thought of termination is too much. Reading everyones comments and knowing there are other people out there is a comfort. I had never heard of TD before and just knowing there is a support group out there is helpful. I thank everyone for their stories and pray for all of us who have had to go through this difficult time...will keep in touch...Grace.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-2532607975058218460.post-11831241602059653202012-11-03T23:12:13.944-05:002012-11-03T23:12:13.944-05:00Thanks for stopping by and sharing your story!Thanks for stopping by and sharing your story!Heidi Grohshttps://www.blogger.com/profile/00037618884442987553noreply@blogger.com