Hello,
Welcome to my healing journey.
On September 28, 2012, at 11:13 a.m., I gave birth to my first child. A beautiful and precious little boy named Henry. He was only 21 weeks old in-utero, and just slightly bigger than my hand. We were forced to say goodbye because he was growing with a fatal and incurable bone disorder called osteogenesis imperfecta type 2a.
Not even my womb could protect him from harm. At an ultrasound with a bone growth specialist, when they discovered his terrible disease, the doctors found that he had already suffered multiple fractures to his brittle bones, and was not going to survive. After Henry’s birth, our doctor’s only comment was that he had a particularly severe form of an already devastating disease.
This site will be dedicated to the memories we have of Henry, my grieving process, and the sincere hope to reach out to other parents who have lost a child. I hope to post resources and helpful information as I discover them.
With peace,
Mel
For Henry 
It is inspiring to read your words, Mel. You have a gift of writing and expressing both good things and hard things, and I think it’s beautiful that you are dedicating your ability to writing about your pain and healing. I think others will benefit from this, and give them comfort as well. What a courageous thing to do.
All my love,
Lis
Thank you Lis, I really appreciate your comment. I feel like I’m just grasping at anything that might help me feel like I’m not drowning, and writing is one of my floaters. Thank you for being there.
xoxo
Mel,
I can’t read your beautiful words withought crying so hard it hurts. You have incredible strength to be able to share your feelings this way and I know you will help others like yourself deal with the grief of loss. All the love in the world to you and Tyler and may you be surrounded by friends, family, love and support at this difficult time. Thinking of you,
Christina (from back in the old Vanier days)
Thank you so much Christina, your thoughts and kind words mean a lot to me and Tyler.
xoxo
Mel my dear,
My heart goes out to you. It is rough trying to grasp onto a reality that tumbled through time before you even had time to negotiate it. Your research, your words and your reflections, I really hope they help. Knowledge can really help but it will never change the fact that it will never be okay that he is gone. I am sending you so many hugs. And I love the name Henry that you guys gave to him. You loved him so much before he was even born.
Hugs 🙂
Thank you xoxo
Dear Mel,
I am so terrible sad to hear of the loss, of Henry. The love a mother shares with her child starts the very first day, that he is growing inside of you. You are very strong, and courageous to write about Henry. It is very hard to read, your loving words without my eyes filling up with tears. Be strong, for Henry & I cannot imagine what you are going through, I don’t think anyone can. I send you Hugs Ilona
The heartache that losing a child causes cannot even be explained and I am so very sorry. We lost our twins nearly a month after your loss and it is still so very raw for me.
Oh Jennifer, that means your loss is really fresh and raw. I’m so incredibly sorry for your losses. Take your time and be gentle with yourself. There is no rushing this healing process, and know that everything you’re feeling is okay and normal. If you ever need to vent or chat, please feel free to email me so we can have a more in-depth conversation mel (dot) lefebvre (at) gmail (dot) com. It’s a very lonely time, so I am here for you.
I am terribly sorry to read about your baby… Sending you healing hugs and love. {{{HUGS}}}
Thank you 🙂
Thank you for sharing Henry with all of us.
[…] The worst day of my life […]
I cannot even begin to imagine your circumstances and the resulting grief and sense of loss. May your blogging continue to give you an outlet for what must be a myriad of emotions. Thank you for following my little old blog, I’ve returned the favour as I would like to support your example of courage. Cheers mate.
Thanks Mike! I appreciate the follow, and I hope your luck turns.
Mel
Cheers mate! 😀
Dear Mel and Tyler. I just want to express my sympathy for you both. I believe in Angels,and I know he surroungs you with love..I wish this hadn t happened to you and your family….love Carol Oss (Mrs. John Oss)
Hi Mel
I hope you don’t mind me posting so long after your initial blog. Thanks for writing so honestly about your experience. I too had a baby boy, Gabriel, with OGI Type 2. The mercilessness of the decision to bring my baby early was excrutiating for me. Like you I felt that it was the best gift I could give him as a mother, especially with the info about the development of his pain receptors etc. And yet it went against every instinct in my body, which was to cling to life for Gabriel.
I birthed Gabriel on December 5, 2005, at 23 1/2 weeks. His legs broke in the birth. I guess I can be glad he wasn’t born at term, when he would have been utterly crushed. It was devastating, and for a while I just I didn’t care that life went on. As time passed I came out of that landscape of acute grief, with only occasional forays into those grey lands.
How are you travelling now with your loss?
If you felt inclined I’d like to email with you. I haven’t met or found anyone else online who has had a child with the same thing
Much Love
Ruth
Hi Ruth,
Thank you for your message – and I am so sorry about your loss. I hope Gabriel and Henry both know how much we love them.
I would love to chat more with you. My email address is mel(dot)lefebvre(at)gmail.(dot)com
[…] Hope, because it’s all I have to hold to to, not to scream and cry every day, throw in the towel and just lie in my bed forever, staring at pictures of my baby that couldn’t be. […]
My condolences Mel. I am so sorry about your loss. I wish lots of strength upon you in your healing journey.
I am really sorry to hear about Henry. I found your blog while doing research for a school paper on the topic. I never knew this decease existed until I stated the research. I admire your strength. My prayers are with you.
Thank you so much for your thoughtful comment. Good luck in your research. If there’s anything I can help you with, please don’t hesitate to ask,.
Mel
Hi Mel, I’m glad that I found your site. My niece is 4 months pregnant and just found out today that her baby boy has osteogenesis imperfecta dwarfism (type 2). It’s devastating news and we have cried since she got the news. I’ve been online searching the internet for hours when I found your site. My heart goes out to you, my niece is just devastated but is refusing to abort (which is what the doctors have suggested that she do). Any words of wisdom for me to share or even take in myself… she is dear to me and her baby boy may be a few generations… but he is my nephew and her pain is my pain.
Brenda, I’m so absolutely devastated by your news. I’m so, so deeply sorry to hear about your nephew’s diagnosis. But it’s so wonderful how supportive you are of your niece. I answered your email in detail, but all I can say is, let the pain out, and above all else, listen will full, unjudgmental ears. I know this is your pain, too, but your niece is the one suffering the most – absolutely guaranteed, and she needs your support right now. Support her in her decision to carry to term. The decision is hers and hers alone – she’s going through enough as it is. Many OI type 2 moms choose to carry to term, and it’s a good decision. You can even go so far as to tell the doctors to back off if it will help. Again, I’m so comforted to hear that you’re there supporting her. A diagnosis of OI type 2 just doesn’t make sense.
Dear Brenda, My daughter was born with OI Type 1 – the mildest form of Oi. She died at the age of 38 after 38 years of unbelievable suffering, pain, indignity and discomfort. If I think back of her pain, and I knew that is what lay ahead of her I would never have subjected her to the pain. Vic had 81 abdominal surgeries! Of course the decision belongs to the mommy… The pain will belong to the child. As a parent of a child with OI we cannot protect them, cure them, of even take away their pain. If I had the knowledge 39 years ago I would never have subjected my precious daughter to it. Good luck and great strength to you as a family.
Mel, I agree with you – Type 2 diagnosis does not make sense at all!!!!
I’m so sorry….. yesterday just seemed like the longest day that was not gonna end. I spent soooooo much time on the internet searching. Finding Mel’s site and communicating with her has helped (and here I am back at the computer again searching)…. not sure what I’m searching for now at this point because “it is what it is”. My niece may be a little in denial of what is to come but my sister is trying to talk to her and help her to understand what is ahead. I did talk to her about all the surgeries (my friends daughter has Arthrogyrposis multiplex congenital and at the age of 3, she has had over 35 surgeries. And her diagnosis is mild compare to this 🙂 I’ve shared that with my sister and she agrees that she does not want to see Garrett go thru all that pain and suffering. How sad this thing is and what an eye opener now that I’m experiencing it with my niece (and she is my only niece). The things that we don’t even know about that families are suffering from are so many! Thank you for communicating with me, my prayers are with you and your family. And even though my faith is a little shaken right now, I know your baby girl is in a peaceful and beautiful place with no pain. When you see her again, you will not see her suffering she will be in NO pain and waiting for you with open arms!! Lots of love to you. Brenda
p.s. I’m taking Mel’s advice (which my sister and I needed so much to hear) and supporting her for whatever decision she makes. We just want her to be as educated about this as possible so that she knows all the options. No matter how we all feel, we will support her no matter what.
I am a bit late getting to your blog, but I’m glad I found it. I am instantly hooked. Like you, we lost our little one. In December 2011 (when I was 20 months pregnant) I went into pre-term labor and gave birth to our daughter, Sophia, who died 1 1/2 hours later due to a non-viable genetic condition. We don’t have definitive answers as to what it was, but they believe it was Pena Shokeir. While it’s a different condition than what your little Henry had, I know the pain of the experiences you describe so beautifully. Your words instantly took me back to situations, emotions, and decisions that had to be made, all of them gut-wrenching. I loved your blog entry about how others try to comfort us, and sometimes use words that have the opposite effect. Your words ring so true for me, and I know I will continue reading what you post in the future. I hope you continue to heal through your gift of words, connecting with others, and new experiences. Best wishes to you.
Laura
Thank you Laura, and my deep condolences on the loss of your daughter. Pregnancy loss just doesn’t make sense, and I appreciate your kind words regarding my blog! It started out as a way to explain what was happening with us to avoid actually seeing people and having to repeat our painful story repeatedly. But this blog has turned in to very much a therapeutic tool that I still use.
Thank again!
Mel
We just got another (dif diagnosis) for my niece’s baby boy yesterday… first it was Osteogenesis Imperfecta Dwarfism and now they are telling her that the baby may have “Skeletal Dysplasia” and fatal. Once the umbilical chord is cut the baby will not survive. My niece has decided that she wants to hold her baby as he passes and put him to rest with a proper burial. They have sent their tests to California Lab for 3rd opinion. It’s so hard to see her so sad….. she is having a hard time functioning now and just doesn’t want to even get out of bed. My sister is spending as much time as she needs to be there for her and encourage her to function and be there for her 2 year old little boy. The waiting for some solid answers is just so overwhelming!!!
[…] from the disease. Her daughter, Vic, only passed away recently. The wound is still raw, fresh. My Henry passed away in September, never having taken a breath. It still hurts. it will never stop […]
[…] many tears spilled on my bed – my refuge – and poured out onto the Internet through my Henry […]
Two months ago I gave birth to a beatiful boy with OI type 2. I would like to get in touch with you to talk more with you.
I’m so sorry to hear of your loss, Tonje. Of course, I’m here for you. I am coming up to the second anniversary of when I lost Henry, so it is a good time for me!
Please email me at mel (dot) lefebvre (at) gmail (dot) com.
I’m looking forward to hearing from you.