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Sarah Halstead

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Lobar Holoprosencephaly

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Lobar Holoprosencephaly is the official diagnosis from Carsyn’s MRI. I am thankful to have a diagnosis, some people never get one. This is basically where his brain did not separate in the front part of his brain. This happened in the first trimester. He said it had nothing to do with the accident and I did nothing wrong. I held it together through the whole appointment, thanks to all your prayers, until he started saying that Carsyn was lucky to have such a great mom. Also that Carsyn had more personality compared to most patients he sees. He said that is really all that matters. He said that you can not change what is done and to be thankful for what you have. I know this but it really rang true when he said that.

In the matter of Holoprosencephaly {Also known as HPE} there are three degrees, the Lobar is the least severe out of them all. Most kids with the higher two have major facial abnormalities and some, sadly, don’t make it into this World. Makes me even more thankful to have Carsyn here with us. This is all stuff that I have looked up on Google.

The neurologist said, Carsyn may not have a sense of smell. We won’t know this until he is a little older. He also may have seizures, so we go next Tuesday for an EEG. We have to wake him up at 5am and keep him awake till his appointment at 8:30. Not too bad, but the hour ride? Is going to be DIFFICULT! Thankfully Kenny can drive while I try and keep Carsyn awake.

The neurologist couldn’t really tell me his prognosis for his life. He just said keep doing what we are doing. He will know more after a year or so. I also didn’t ask whether this ruled out Cerebral Palsy or not. I don’t think he does/will diagnose Cerebral Palsy this young. I am also not sure how high muscle tone and lobar holoprosencephaly are connected. I have all these new questions but glad I am getting some answers. I do think right now everything else is fine and his main concern is whether or not Carsyn is having seizures. I did tell him about Carsyn’s breathing episode on Christmas Eve. That concerned him. He said if that happened again to video tape it. We should know those answers by the end of next week.

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Comments

  2. Sara says

    My husband and I are considering adopting an infant with lobar -holoprosencephaly...I really appreciated finding your post on it, as I need to hear from the "real" folks out there...all this medical jargon is making me depressed, and it really gave me hope to see the pictures of Carsyn. Thanks!

  3. Dawn Tate says

    Our daughter was born 12-12-2011. And was diagnosed with Lobar Holoprosencephaly. This was the first time that we learned of this. We were told that she had fluid on the brain and that led them to do a MRI right after birth. This is when they found that she had this condition. We are unsure what we have in store for us, but we do know who does know, and that is our LORD and Saviour. We are so blessed to have Abigail in our lives. She is such a blessing to us already. We go to the neurologist on the 9th of Jan. Hoping that we can get more of our questions answered. We contiune to keep Baby Abigail in our prayers daily and will do so with Carsyn. Maybe we can be each others support during this time of the unknowns. May GOD contiune to give you peace and joy as you watch your precious son grow. Enjoy every moment that you can. Please do not hesitate to send me a message anytime that you need to, or want to. Dawn & Jim Tate

  4. ruth says

    Hi there my daughter has alobar holoprosencaphly, and has hydrocaphilis, she is now 11 weeks old and a few weeks ago had a shunt fitted in. Lydia is doing so well she has no facial abnormallities. We truly believe that God has really intervened and is restoring her brain. She is now smiling and makes lovely baby sounds. We thank God daily for Lydia another day he has let us have her for. xx we are from the uk. xx

  5. Karli says

    Oh Sarah...I've been so absent from the computer lately, I didn't hear of Carsyn's diagnosis until just now. Keeping him and you in my prayers! Hugs!

  6. Darlene says

    I hope the MRI gave you some of the answers you were looking for. My son 13 mths now and got the same diagnosis a month ago. I noticed you mentioned something about a breathing concern you had at x-mas could you please tell me what it was and what the dr suggested to do because my son continuously 'holds' his breath and the dr seems to think he's just doing it for attention but i think it may be something else.

  7. Andie says

    Oh my! All you can do right now, like you said, is to be thankful that he is here as some babies don't make it as far as he has. He's a blessing, a true gift from God. And, God doesn't give us more than we can handle, which means He believes you are strong enough to get through these obstacles. He is such an amazing little boy. It sounds as if it could have been a lot worse. I'm glad you are getting some much needed answers, especially early on. That helps a ton! Hugs all around!!

  8. Erin says

    It's nice to finally have a diagnosis but it's all a process and it's going to take time to settle into this new role. I have no doubt that you are going to do everything you can to help him reach his goals in life. And he has the best support and love a child could have. In a while you'll see that though your life my be different then typical, it's wonderful and perfect too. Hugs.

  10. Jenn says

    So wonderful to get a diagnosis... and your heart is finding peace... Amen!! our little guy is 8 and we still don't have one for him... alas... that is for God to worry about... (though I try to sometimes as well... *sigh*) Some days it will be hard to stay Thankful and or positive ... but he is perfect JUST THE WAY HE IS... but you can do it =) ... through Christ who gives you strength!! =) Enjoy every blessed moment you have with your sweet little family!! Laugh often! =)

  12. Brooke G says

    He is indeed lucky to have such a good mommy. Hang in there Friend. I will be sending you prayers and lots of strength for the months to come.

  13. Tiffany says

    Thinking of you and Carsyn. We have done the EEG with an hour ride, lots of open windows and toys. You will be in our prayers. Tiffany

  14. Carrie says

    Carsyn is such a cutie! That being said, I'm so glad you finally have some answers - even if it is a 'wait and see' kind of thing. There is no doubt that with a mom like you, his future looks very bright. Hugs!

  15. Misty says

    So glad you have some answers. Carsyn has really worked his way into my heart. Give him a squeeze for me and kiss his adorable little cheeks.

  16. Life with Kaishon says

    Oh my goodness! I am so glad you have some answers. He is such a beautiful baby. I cried when you wrote what the dr. said about having a good mom. You are a great Mama. I am going to pray for you tomorrow any way even though I am late with it.

  17. Kristine says

    I know I'm a few days late in leaving my love. I read the news on my phone and couldn't comment, but do send lots of love. I know many HPE families, and am so amazing by the amount of HoPE there is out there for these kids!

  18. Rosie@leavesnbloom says

    Oh Sarah I am so glad that they have given you a diagnosis and you can start your life afresh with the knowledge that you now have a support group and medical care team that can help you and Kenny through this.

  20. Cedar says

    I am glad there is a diagnosis and it can help link you with families who are handling the same thing. Really the internet community can be a real blessing. Keeping him awake for an hour car ride--difficult. I will also keep you and your sweet family in my prayers.

  21. Roselle says

    Hi Sarah, I just replied on the HPE support group..although I forgot to ask you some things. How old is he now and when did they find out anything was wrong (in utero or after birth)? You can reply back here or on the Yahoo groups. Thanks! Take care!

  22. Roxanne Steele says

    Carson is a beautiful boy. My daughter, Rachel, has semilobar HPE. I suggest you visit the website www.FamiliesforHoPE.org and look at the conference pictures, Child of Hope tab, and information listed. Some of what you find on goggle is not the most accurate information. The Families for HoPE site also has links to the Carter Centers for Brain Research in Holoprosencephaly and I suggest you contact them to have his MRI read by their professionals. About 30-40% of the MRI's they read have a change in diagnosis. They will read the MRI at no cost to you. They also can link you with the NIH study in genetics of HPE. NIH will test Carson's blood for free. We were told no genetic link but then when the NIH tested Rachel's blood they did find a genetic link. A small deletion on one of her genes. Good luck. Check out Rachel's caring bridge site also!

  24. Sarah @ 2paws Designs says

    After your comment on the family edit post, I had to look back. I'm glad you got answers and am lifting your sweet boy & your family up in prayer as well as the medical professionals. Your son is a blessing. God sent him to you for a reason and I know has a strong hand around you all. ((HUGS))

  25. Stacy Uncorked says

    I'm so glad you got some answers - what a difficult thing to have to go through. He's SUCH a CUTIE!! I'll be keeping him and your family in my thoughts and prayers. ((HUGZ!!))

  26. kristin says

    My thoughts and prayers are with you. I'm sure this is all difficult to process, but you are an amazing Mom and I just know that you'll overcome all obstacles placed in front of you and make the most of the things that you have been given.

  27. bettyl says

    He's such a cutie! I guess having some answers is a comfort of sorts. I know that God will give you everything you need to deal with the future and it sounds like you already have the right start!

  28. kellyk says

    It must be bittersweet to finally get some answers. I'm thinking about you guys a lot. He is so sweet and you are obviously doing all you can to keep it together for him. Stay strong mama!

  29. Stacia says

    It always seems like one big answer leads to so many more questions. I'm so glad you've got the big answer, and I hope the other questions get answered quickly. No matter what, though, it's so clear that the amount of love surrounding your sweet little boy is never-ending!

  31. Joni says

    Stay strong mama, you are doing a great job so far. You definitely have a lot to be thankful for and the Lord never gets things wrong. He knew you were the best mom for this job and that you will be able to handle anything that comes your way. That is certainly something to be proud of.

  32. Amber says

    So first of all, I must comment on Ashley's comment. She can always make you smile....can't she??? I am thankful to hear that the MRI resulted in a diagnosis, as I know that offers so much relief, but also raises more questions. I have never heard of this condition, but am sure as you research you will find more ways to continue caring for and working with little Carsyn. Thank you for letting us all journey with you and I, too, pray he is not experiencing the seizures. Praising the LORD with you for your little man!

  35. Sarah says

    So glad to hear you got some answers from the Neurologist. Like you said, some people never do. I can't imagine that this is easy, but I can give you this piece of advise.... You have lots and lots and lots of questions. Keep a small notebook in your purse/diaper bag/laying around the house etc. as a question pops into your head, write it down in your notebook. this way when you go back to the DR, you can actually remember all your questions. you can also write down some answers, or make notes as you go and it will all be in a central location. Learned that trick with a family member who was diagnosed with Alzheimers years and years ago. Its amazing how somehting so simple as a notebook can help you literally collect your thoughts. Best wishes to you and your family. You are a wonderful mother!!!!

  36. Jaymi McClusky says

    Wow, I'm so sorry you have to go through this, I can't imagine how scary. But at least you have a diagnosis and can start making plans. Great pictures of Carsyn too, btw!

  37. Tara says

    I'm glad you finally got some answers. You are such a good mommy...thoughts and prayers your way.

  38. Branson says

    I have been thinking about you guys so much. I agree that a diagnosis its a blessing in itself. I will continue to pray! These photos are so precious! He is such a handsome little man! :)

  40. Allie says

    I am so happy you finally have some answers and now can move on to the next step. He sure is one PRECIOUS baby and has an AWESOME mama!

  41. CJ says

    Glad you got some answers, even though Im sure they werent easy to hear...Carsyn is such an amazing little guy - and with a mom like you Im sure he will make much more great progress. Praying for you all.

  43. Kim says

    It has to be so nice to hear a diagnosis. Now is the time for lots of prayers and some research. I know that Carsyn will surpass anything they say and be one of those children that makes the doctors mouths just drop with his abilities. We are all here for you.

  45. Adeena says

    So glad you're getting answers... and praising God with you that Carsyn is here!! You can totally see his personality in all these pics. :D

  46. Gina says

    Oh my goodness Sarah. So much to process as a mom. I think you have a very healthy outlook on the whole situation & I know that your faith will be your rock through each twist & turn in this journey. Prayers continue for you & your little one. Hugs!!! & my ear is always available if you need to talk.

  47. Chari says

    I am so glad you got the diagnosis. How amazing that he did not have the common problems with this dx! I'm still praying for you guys as you find out more about it. Hang in there, you are doing great!

  49. Nicolasa says

    I am so glad you're getting some answers. I can imagine the millions of questions swirling around in your head. Just write them down as they come to you and hopefully that will clear your mind for a little bit so you can give extra hugs and kisses to your sweet boy.

  50. Ashley Sisk says

    Well first off, PRAISE GOD that Carsyn is here! It sounds as if his situation could have been a lot worse. I actually dated a guy that couldn't smell - he had some breathing problems and nose bleeds but he eventually had surgery to repair that - so the smelling situation isn't that big a deal. I, like you am more concerned about the seizures too. I'll continue praying!

  51. alicia says

    Wow. So nice to finally have a diagnosis, I'm sure. But so much uncertainty as well. Thanks so much for keeping us informed. My thoughts are with you...

  52. Rochelle says

    I am prying for you guys. I am glad that you have some answers and you are a wonderful mommy.

  53. tabby says

    Sarah, Wendi told us about the latest with little man. I'm glad you are starting to get some answers. Both of your both boys are blessed to have you handpicked as their mommy! Just know you have more people keeping you all in their thoughts and prayers than you could ever even imagine! <3

  55. Ambria D says

    SO glad you got answers and even more glad that it is the least severe of them. And the doctor was very right! You are a great mom and are handling this SO well! My thoughts are with your family all the time! I hope everything goes well with the EEG. Lots of hugs to you and your sweet baby Carson! He always makes me so happy seeing him smile!

  56. Veronnica W. says

    Well, I am so glad you've been given some answers. I'm so sorry you have to go through this and I'll continue to pray for you and Carsyn. He is such a cutie pie and he IS lucky to have such a great mommy!

  57. Flower Photography says

    So glad you have an answer and can get all clued up on what it means as much as possible. You have been the best mum so far and know you will continue to be for the best of your precious lil boy(s). He is gorgeous. 8*hugs**

  58. Michelle says

    Oh, I'm so happy that you were able to get some answers today! I'm so proud of you for keeping it together so well at Carsyn's appointment. You're such a stong and wonderful mother. =) Keep being his #1 advocate as I know you are. Praying for you =)

  59. Meg :) says

    I'm so glad you got some answers, I hope that helps ease your mind a bit. You ARE an amazing mom, and Carsyn is really lucky to have someone who cares as much as you do. Keep your chin up, girl!! :)

  60. Candice says

    I'm so, so glad you have answers. You are being so beautifully positive about this - you're an inspiration. Knowing what you know now, we can all agree that you are indeed lucky to have Carsyn and that he's as joyous as he is.

  61. rachel says

    I'm so sorry for what you're going through. Though I am so glad that you are getting some answers. Carsyn is so lucky to have you. Keep up the good work, momma!

  63. casey says

    I am not familiar with this condition at all but, I am thankful that the MRI was able to bring some clarity to this situation so that there isn't as much wondering anymore. How are you doing? Can I do anything for you? I hope you are getting lots of love and support! Carsyn is an amazing and way freaking adorable. I hope that with each passing day more and more information comes through to work through this. I'll continue praying!

  64. Courtney says

    Sarah, my heart goes out for you and your family! Praise God that you have a diagnosis!! I will keep you in my prayers as you work through what all of this means for y'all and Carsyn!! He is DEFINITELY blessed to have a mama like you!

  65. Wendi says

    My heart is with you Sarah. I am so glad you finally have some answers for Carsyn - just remember that you don't have to carry this all yourself. You're an amazing Mom! - both you and Carsyn have a ton of love and support surrounding you always. Love you!!! xo - w PS, Quinn wanted me to tell Carsyn that there is nothing wrong with being a little different. That's what makes you special. :)

  66. Christine says

    I am praying for you and your entire family. You and Kenny are wonderful parents and Carsyn is very lucky to have you two to be his voice. Keep your head up! If you need anything, let me know.

  67. Angee says

    I'm so glad you got some answers. My thoughts and prayers are with you over the next few weeks while you process everything. The doctor is right, you're a fantastic mom.

  68. Lisa says

    I'm glad you got some answers, even though it may be difficult to hear. My prayers continue to be with your family!

  69. Kayla says

    My heart just aches for you. But I'm glad you finally got a diagnosis and hopefully you'll have all of your answers soon. EEGs are totally painless, so at least this test won't be as bad as the MRI. Sounds like you have a really great doctor. What a blessing! Praying for you as always.

  70. Robin says

    Yes, I know you are thankful to have something that will help you understand a little more what's going on. At the same time, I can't imagine that it is easy. Many prayers for you guys... and praying for your EEG next week!

  71. Jessica says

    I'm so glad you got some answers but I know this has to be so hard for you to take in and process right now. You are doing all you can and ARE a great mom, just like the doctor said. Hang in there and go easy on yourself, I'm here whenever you need me!

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