Born With Hole In Heart And Hydrocephalus
I was born two months early.
I was born with hydrocephalus and a hole in my heart. At nine months old, I had a stroke, at the hospital in Norway.
They’d never seen any one as young as me ever have a stroke. The doctors left me for three days before they did anything. By then I was in and out of consciousness. They didn’t think that I would survive the stroke.
The stroke changed my hydrocephalus so that the ventricles in my brain don’t change size - they’ve stayed small. The small ventricles in my brain make it challenging for my doctors to figure out what is going on with me as the brain scans show nothing wrong.
Source: bandbacktogether.com
Falling Apart
Every year, 5,000 children pass away.
This is her story.
My world is falling apart.
My just-turned-six year old is dying.
His brain stem is deteriorating, a side effect of the chromosome abnormality he has. Twenty-nine surgeries haven’t been enough to save him, though they have bought him more time with us.
We are told that he’s the only child in the world who has his conglomeration of medical conditions (the chromosome abnormality, spina bifida, a connective tissue disorder, chiari malformation, intracranial hypertension, and another half-dozen minor diagnoses).
Source: http
Spotlight Series: Tribute
Each month, The Band is choosing to focus our spotlight on a particular subject.
This February, we’re focusing upon “hearts.” Do you have a heart defect? Has a heart problem affected you? We want to hear more about your hearts and the hearts you love, The Band. Please send us any and all stories you have about hearts, heart defects, heart problems, heart disease, well, anything!This month, we’re throwing the spotlight squarely upon hearts, one of the most important parts of our bodies.
What’s your story?
To know her was to love her.
Source: bandbacktogether.com
Valentine’s Day Is A Day To Celebrate Life
Each month, The Band is choosing to focus our spotlight on a particular subject.
This February, we’re focusing upon “hearts.” Do you have a heart defect? Has a heart problem affected you? We want to hear more about your hearts and the hearts you love, The Band. Please send us any and all stories you have about hearts, heart defects, heart problems, heart disease, well, anything!
This month, we’re throwing the spotlight squarely upon hearts, one of the most important parts of our bodies.
What’s your story?
Valentine’s Day used to be a day for love. A day to seek out that romance and cherish a relationship or find a new one. It used to mean chocolates and candle light dinners, sappy cards, and a romantic movie.
Valentine’s Day has changed in our house. It has become a celebration of life and a reminder of how fragile that life can be.
Source: bandbacktogether.com
What Happens to Your Heart When Its Heart is Broken?
Each month, The Band is choosing to focus our spotlight on a particular subject.
This February, we’re focusing upon “hearts.” Do you have a heart defect? Has a heart problem affected you? We want to hear more about your hearts and the hearts you love, The Band. Please send us any and all stories you have about hearts, heart defects, heart problems, heart disease, well, anything!
This month, we’re throwing the spotlight squarely upon hearts, one of the most important parts of our bodies.
What’s your story?
After what can only be described as the most misleadingly wonderful first pregnancy (my subsequent pregnancy was miserable in comparison), the light of my life and one true love was born.
She was 7 pounds, 4 ounces of awesome! She was everything I had dreamed of since I was 12. She was instantly my new BFF, and after a messy divorce from her father, she and I were rocking solo status and naturally did everything together.
I have never hidden the fact that she was my everything, and I frequently compare her and her brother to my heart and lungs: without them I couldn’t live.
Source: bandbacktogether.com
February Spotlight Series: Hearts
Since February is the “month of love” and also American Heart Month, we’re pushing Hearts into the spotlight!
Kristine Brite, also known as Cora’s Mom, works with us behind the scenes here at Band Back Together. Cora died at 5 days old from a congenital heart defect and since her death, Kristine has reached far and wide to push for newborn pulse-ox screening. States are pushing through legislation left and right to put into place guidelines that will save lives.
So it’s time to Band Back Together for All Things Heart. Share your stories. Tell your tales. We need to know how heart conditions have touched your lives. Anything heart (not the shape or love) related is fair game.
Let’s rock out and tell the world OUR stories.
Kristine is here to share HER heart story.
Now it’s YOUR turn, The Band!
Suddenly and unexpectedly while I breastfed her one early morning, she died. We had no clue why until the coroner called a few days later with the preliminary autopsy results. She told me Cora died, at five days old, from congenital heart disease (also congenital heart defect). I’d never heard the phrase.
Source: bandbacktogether.com
HCM: Or, How I Stopped Worrying And Learned To Love My ICD
When I was young, I always hated gym. I was never good at it. The running and the throwing of things was just never my bag.
I was always short of breath and sometimes even came close to fainting. I always chalked it up to being a fat little kid who was grossly unathletic.
I lived for ninth grade because I only had to take a semester of gym and then it would be over forever, or at least until I got to college. I finished 9th grade and gladly went on my merry gym-free way.
Fast forward to 2007. I had been out of high school and was in my third year of college (yeah, I’m a wee one). I began experiencing back pain, the likes of which I had never felt.
Source: bandbacktogether.com
Meet Ulysses
January marks the first of our Spotlight Series, and we’re choosing to honor Aunt Becky’s daughter, Amelia, who is the sole reason that The Band exists.
Amelia, like so many of our children, was born with a birth defect called an encephalocele. She’s gone on to vigorously beat neurosurgery and the odds stacked firmly against her.
So it’s time to Band Back Together for Birth Defects. Share your stories. Tell your tales. We need to learn about the birth defects that have touched YOUR life. Let’s rock out and tell the world OUR stories.
It’s YOUR turn, The Band!
I wrote the following on my blog about 2 months ago. My son is now 10 weeks old. He has a congenital heart defect and severe limb differences with all four limbs affected.
I’m here now because I have a story to tell, a story with infinite ellipses and a looming question mark. It’s just the beginning of a story, really.
But does the story about my new son start the day he was born? Or the week before when we learned he had profound defects and would likely not survive? Or the start of my pregnancy when I learned he was one of three, two of which did not remain viable?
Source: bandbacktogether.com
My Daughter Was Perfect: She Was Not Defective
January marks the first of our Spotlight Series, and we’re choosing to honor Aunt Becky’s daughter, Amelia, who is the sole reason that The Band exists.
Amelia, like so many of our children, was born with a birth defect called an encephalocele. She’s gone on to vigorously beat neurosurgery and the odds stacked firmly against her.
So it’s time to Band Back Together for Birth Defects. Share your stories. Tell your tales. We need to learn about the birth defects that have touched YOUR life. Let’s rock out and tell the world OUR stories.
It’s YOUR turn, The Band!
A few days after my daughter died of an undetected congenital heart defect, someone who had held her and spent some time around her told me, “I knew something wasn’t right with her. I knew something was wrong.” The phrase has stuck with me.
My daughter was perfect.
I don’t like the word defect much. All of these children born with what we call “defects” are just perfect. They aren’t defective. They are the imperfectly stitched handbag sold at a discount. They are much more than their sickness or defect.
Source: bandbacktogether.com
VCFS - Velocardiofacial Syndrome
My little brother is an angel - the best kid I know. I am not using his name to respect his privacy.
I remember seeing him for the first time in the hospital. He was SO small. His skin was SO pale. He looked sick. He looked so, so sick. The look on my father’s face gave it away: something was wrong. He’d been born with a defective kidney. That was the first sign, although we didn’t know it at the time.
He went through a few months an abnormal baby - he slept ALL the time. His pale skin looked as if no blood streamed through his veins. He barely ate, so he didn’t grow much for the first three months. We struggled to find an answer - anyanswer - to why he was so sick, but nobody knew. No one could tell us why he had to suffer. I was so frustrated andangry; I just wanted my little brother to be okay.
Then the doctors told us he they’d found the problem and he needed surgery, and fast. They needed to remove his defective kidney because it was releasing toxins into his body. I was so relieved! So what if he only has one kidney? Lots of people only have one and still live great lives! I was so happy they’d finally found out what was wrong with him. He would be fine after they removed it!
Source: bandbacktogether.com
The Anniversary of My Daughter’s Death
I don’t know what to call today. My daughter’s death day? My daughter’s death anniversary? I should have to come up with a name today. Some people refer to the day their child died as their “angelversary,” which is of course perfectly fine. But, my daughter, she is not an angel. I don’t think of her that way.
Today is my daughter’s death day.
December 6.
This is the second anniversary of her death.
Last year, I relived every painful moment of that day. It was so tolling. Last year, it was worse than her birthday, which is less than a week before.
I’m scared of what this year brings. I’m scared to relive all the horrible details of the night my daughter died.
Source: bandbacktogether.com
Joshua’s Heart
My husband, Joe and I were thrilled to learn that we would be having a baby.
Here I am, fat as hell, and hot as hell (the woes of pregnant summers in Houston) in June of 2009.
Friday, June 12, 2009 was my due date. I was scheduled for a c-section on Monday, the 15th, but I begged my doctor to allow me to go into labor on my own. It’s rare to find a doctor that will allow you to have a vaginal delivery after a previous c-section. On Saturday, I started feeling contractions. By 11pm, after a day of tracking my contractions, I was certain this was the real thing. I went to the hospital and got it confirmed. I was so grateful to have the chance to go through eleven hours of labor before being wheeled into the OR.
On Sunday, June 14, 2009 at 1am, Joshua Barish Weisman was born.
He was perfect. Ten fingers, ten toes. He had brown hair and blue eyes just like his Dad. He was entirely everything we had dreamed he would be.
We introduced our two year old, Ben, to his brother and had our first photo taken as a family of four.
Source: bandbacktogether.com
October 15th: Wall Of Rememberance
Pregnancy and Infant Loss Remembrance Day 2011
The light of a distant star continues to reach the Earth long after the star itself is gone. ~Author UnknownToday we pause to remember the stars of our soul that were extinguished far too early.
To those parents who are missing their babies today and always, The Band sends our love and prayers.
To those babies who never got to experience the joys of Earth and whose lives were cut very short, we miss you. We miss you and wish we could have one more moment with you if we can’t have a lifetime with you.
Today we honor the short lives of some of the brightest souls, souls that have touched many and have taught us to cherish all of life’s moments.
Band Back Together’s Wall of Remembrance
Ewokmama’s Baby: March 2005, miscarriage at 13 weeks
Jana’s Son, Charlie: Born May 21, 2003 and died June 14, 2003 from late-onset Group B Strep
Erin’s Babies: Baby 1, September 2006, miscarriage; Baby 2, January 2007, miscarriage; Baby Girl 1, December 2008, late miscarriage; Baby Girl 2, born still on August 17, 2009 at 18 weeks.
Source: bandbacktogether.com
Remembering The Band’s Babies
Those of us who have experienced the loss of a baby, be it from miscarriage, stillbirth or infant loss, don’t really need a day to remember. Every day is a day of remembrance for us, whether the grief is fresh or decades old.
Some of us choose to live out loud with our grief, talking about our children and experiences to help others deal with their own grief and pain. Some of us choose to grieve quietly and inwardly. Neither is right and neither is wrong. I’ve said it over and over again, grief has no timeline and no rule book. The only rule is that you have to go THROUGH it, not AROUND it.
In September of 2006, the House of Representatives voted to pass House Resolution #222 to declare that October 15 is Pregnancy and Infant Loss Remembrance Day.
This is the day that the nation as a whole takes time to remember our babies, to remember the million babies each year that parents have to say goodbye to. If you’ve not experienced the loss of a pregnancy or infant, this is a day to pause and remember your friends and family who have experienced a loss.
Band Back Together wants to honor and remember your babies.
Source: bandbacktogether.com
Our Normal Is Different
Our normal is different.
What I don’t think a lot of healthy-heart parents understand is that a pill or surgery won’t “fix” our special-heart babies. Yes, it will treat their symptoms or correct a defect, but ultimately, we always watch, wait and worry.
My son has hypertrophic cardiomyopathy. He takes one little pill each day, sees his cardiologist every six months, and is told not to participate in any competitive sports. He has been “stable” his entire life, but just under the surface is the constant worry that today will be the day something happens.
Every day that he wakes up, I am grateful.
He is thirteen, and I still watch him sleep, checking for his chest to rise and fall. I listen for his breathing. I don’t think parents of heart-healthy children can comprehend the daily knot in my stomach while watching and waiting.
This summer he wanted to go to sleep-away camp. His cardiologist said no. He was worried about the most dangerous potential complication: dehydration. The doctor didn’t have faith that a nineteen-year old counselor would understand the severity of our situation.
Source: bandbacktogether.com
