Unconditional Love
October 1, 2012 * * * * * Posted by: Sue 
April 4, 2012 - The text from my brother said “Guess who is pregnant!” I replied, “Guess congratulations are in order!”
We all were ecstatic with this great news. The family was ready to joyfully welcome a new family member.
Sometime in early August I had a voice mail from my brother. “Sis. Call me.” I knew from the trembling of his voice - almost tearful - that something was wrong. My suspicions were correct. While my pregnant niece was healthy, her un-born baby was exhibiting signs of serious problems.
After several tests at two hospitals, it was determined the baby has Trisomy 18 (also known as Edwards syndrome); a chromosome disorder.
As you can imagine, the whole family has since been on an emotional roller coaster -- with my niece and her husband, in their first year of marriage, being especially tested.
Trisomy 18 babies, I’ve come to realize after researching information on the Internet, typically have multiple health issues. Many are still-born and many babies only live for hours, days, or a few weeks. If a Trisomy 18 baby survives for any period of time, the baby will typically require extensive care and support for their entire life.
Recently I had the opportunity to spend some time with my niece, who is demonstrating remarkable strength and is setting a positive example for the rest of the family. I asked her what she would tell the www (whole wide world) about Trisomy 18 if she had the chance.
Immediately she said that carrying a baby to full term, all the time knowing that there will be challenges to face when the baby is born, is quite different than experiencing a miscarriage. Like all moms-to-be, she feels the kicks and is forming a bond with the tiny life growing inside her. She quickly added that she is thankful technology is such that she was told of the syndrome early enough to study options and make plans.
She stressed the importance of having a support group and mentioned several online sites with forums such as http://www.t18moms.com/, http://www.trisomy.org/, or http://www.hopefortrisomy13and18.org/. With Trisomy 18 being so rare, local support groups are not always available.
Whether her strength and resolve comes as a result of her training as a nurse or from her personal inner-core, she is truly amazing. I'm impressed that she has vowed to help others who experience pregnancies with this syndrome and am confident she will be a valuable resource to others.
I share this very personal story with our Vision and Verb community not to seek sympathy, but to increase awareness of this rare syndrome. And, I share this story as a tribute to my niece and her husband who say, “We may not have our baby with us for very long, but we will love her unconditionally for the time she is with us.”
“Every child forever changes our world.” ~ Trisomy 18 foundation
Trisomy 18
Reader Comments (28)
Thank you for this very moving post. 'we will love her unconditionally for the time she is with us.' Can any of us ask for more? Ny heart goes out to you all.
What a role model your niece is! I can't even imagine how stressful this time must be and please know Sue that everyone in your family will be constantly in our thoughts. I wasn't aware of this type of disease.
Ohhhhh. The emotional impact of such a story...hearts are bursting with it all! Everyone who is involved...and now, we, too, are part of the ripple effect. My guess is we are all getting educated today, Sue! This story is reminding me of someone I know through my own niece whose child passed shortly after birth. I want to now check to see if she also had Trisomy 18, because I recall it was a rare "disorder." Please keep us informed, as you are able....
Having had a good friend whose baby was diagnosed with the trisomy disorder - I know about the emotional turbulence and heartbreak of it all. Your niece sounds like a truly amazingly beautiful young woman...a pillar of love and strength. My heart breaks for her..and for your entire family - having to go thru this. What a sadly...evocative post!
My grand-daughter passed a couple of years ago, also from "a rare disease". Those words strike fear into the heart because it means there is no common treatment available. Then the knowledge that the end is coming is a double edged sword - you are going to lose here, but she won't suffer any more. I can't imagine how much worse it must be to actually carry that child not knowing for how long, and what the outcome will be. I feel so sorry for the parents and the whole family, As strong as they appear, they hearts must be breaking inside. All we can do is send our thoughts for the best outcome.
My thoughts go out to your niece. I've watched a young woman go through something similar with her daughter, who lived for a few years with live-in nursing support. It was pretty amazing to me how someone so young could handle so much.
My thoughts and prayers also go out to your family. How difficult this must be, and yet how moved I am by their outlook, their gift of unconditional love.
I do feel educated by your post, Sue, something we can count on here at V&V and something you can count on is knowing how many more souls are holding you and your family close.
Like so many others, I've not heard of Trisomy 18. Awareness is a first step toward finding a cure for these terrible diseases and disorders, and you've done us a great service by posting about this here. Clearly, your niece is rising to the challenge, heartbreaking as it is. My best to you, and to them all.
Susan, I sit here reading this post with tears in my eyes. My heart breaks for Lindsey, her husband, the baby, Mike & Glenna & all of you. Phyliss had told me about her condition, yet I'm at a loss of words to say to all of you. I think back to when Brents cousin, Tiffany, lost her baby at 12 days old to another rare disease, CDH. This is all so hard for these young families, yet they are all so strong. I admire their strength, as their hearts are breaking. Tiffany has gone on to raise so much money & awareness for CDH, maybe this is something Lindsey can do in the future too, for Trysomy 18. I think of Lindsey, the baby, and send them love & prayers. Thank you Susan for sharing this.
Wow Sue, a very emotional and heartfelt post. My first reaction was sorrow for the family, but then I realized how lucky this baby was to be blessed with the unconditional love she will be receiving. They sound like a terrific couple and I'm glad they can find support on the internet.
thank you for sharing her story.....for letting light
fold open on this hidden pain.
Something so sacred about carrying life
so unselfishly and loving so wholeheartedly.
I love that quote from the foundation
"every child forever changes our world"
....beautiful, beautiful perspective.
grace and gratitude,
Jennifer
What a wrenching yet heartwarming post. The challenge of carrying a baby with problems to term is almost unimaginable but it sounds as if your niece is surrounded by a wealth of love and support and they will not be alone on their journey.
Wishing your family peace and strength. What a moving tribute to a couple of such character.
Your niece is an inspiration, it must have been a difficult thing to come to terms with.
I have never heard of Trisomy 18 before so as well as being heartwarming I found your post very informative.
Sue,
Thank you! You honored her so lovely, found myself with tear of pride coming from my eye's just from knowing her. Lindsey is also my neice and I love her, baby woodford and KT so much. I also have done much researching on Trisomy 18 as I had not heard of it either. I know one thing, God only gives special babies to special couples! I am praying for all.
I work with Lindsay and she is such an amazing woman. KT, Lindsay, and the baby are in my prayers everyday. Lindsay is so strong and inspiring. It's great how strong Lindsay so that she can help others too. Lots of love to them and their families.
Words are inadequate to express the appreciate I feel regarding your post. I celebrate the wisdom and maturity of your niece and know that coming into that wisdom has taken tremendous courage. May all of you continue to be surrounded by family, friends and love ones who, with courage, will also walk alongside all of you on this journey.
What a beautiful couple!! It is amazing what strength people can share through unconditional love. Thanks for including me.
I sit at the keyboard and just ponder.
Dick Dougall
Sue, thank you for sharing this inspiring story. I find that words are inadequate to express how this touches me. My first child died after one day of life. That, in itself, was traumatic. I can only imagine how your neice and those who love her must feel, and I pray for their continued peace. May they find comfort in knowing that their display of strength and this very tiny baby's life have touched many of us already.
Kudos to your niece and her husband for their courage and their love. This is so hard to go through. Our second child died before she was born - that was traumatic. I wish your niece, her husband and all the family strength, faith and the support of each other. All the blessings to the baby.
I'm sorry, Sue, I am at a loss of words, and it brings back memories. This is something that will be with you all your life.
And Sue, thank you for sharing this deeply moving part of your family.
I was reading your post yesterday and got to think and research all I could about this trisomy 18. First of all my prayers are sent for your niece, her husband their unborn child and all your family. I can not begin to imagine how it must feel to be in such a position. At the same time, I can't help but feeling that this family is the best fit for their heart and their love will carry them through these trying times. Thank you for your courage Sue in sharing their story
Thank you to ALL for the warm wishes and prayers for my niece, her baby, and those who surround her. It is especially nice to have so many of her friends and family join us today at Vision and Verb. Welcome. We hope you'll drop in again.
Oh, tears in my eyes. Sending love and light to you all.
My brother had a child that did just hours after birth, I don't at all know if the exact cause was ever determined, but now I wonder if it could have been Trisomy 18.
May your niece and her family find the strength they need to carry them through. xo
thank you for telling us about this....it wasn't a disorder i had heard of. similar emotions to a couple weeks ago when friends of mine had their first baby, something was wrong and they found he had a very rare chromosome disorder...out of the blue, no warning. they are young, and focused and positive - they will be the best possible parents to this little boy, for as long as they have him. that i know for sure!!! as i know so will your niece and her husband.