Congenital Heart Defects
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.
Problem is, my brain scans look normal even when there's something wrong. In my life, I've had nine brain surgeries and the longest I've gone with the same shunt was twenty-one years.
Over the last few months, I've been having some pain near my heart, so I've had some different tests run on my heart. One test doesn't show my whole heart clearly enough, so the doctors aren't exactly sure what's going on with my heart. They think some of the pain is due to acid reflux.
At the same time the pain in the my heart began, I noticed a bit of pain in my shoulders as well as some pain in my abdomen. The doctors suspect I tore the rotator cuff in both of my shoulders.
The Medical Mystery Tour continues.
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).
The amount of pain medication he receives every day is a drug-addict's dream, is administered around the clock to keep him from experiencing pain. It is so beyond awful that I don't have words to express my feelings. Watching him decline is the worst thing I've ever experienced in my life and that is saying something.
As if that isn't enough, the two children my family adopted from Ukraine eighteen months ago have a lot more "going on" than we were told about.
My two-and-a-half-year old has Down syndrome, autism, and reactive attachment disorder. She functions at the level of a 10 month old.
My four-and-a-half year old has Down syndrome, a heart defect that wasn't repaired properly, systemic juvenile idiopathic arthritis, atlanto-axial instability, autism, tethered cord, syringomyelia, mild hearing loss, and is considered both medically complex and medically fragile. We've been told repeatedly by numerous specialists that she isn't going to have a long life. She functions at the level of an eight month old.
Neither of the girls walks, talks, signs, eats (they're g-tube dependent, just like my six year old) or interacts well with people (they interact, but only on their terms).
When we adopted the girls, we knew they had Down syndrome and that the four year old had a heart defect.
Everything else has been a big 'ol surprise since we brought them home. Honestly, it feels like discovering new problems with our kids never ends.
We didn't know our son had this chromosome abnormality and would die soon. If I'd known this, I wouldn't have adopted his siblings, or at least not when I did.
To top it all off, my marriage is falling apart. I know I should care, but I don't have the emotional capacity to handle it. I just want him to leave me alone. I don't want to have to deal with him on top of everything else.
I'm struggling in every sense of the word. I don't know anyone that understand how this feels.
Yes, lots of people have lost a child to death.
Yes, lots of people have a medically-fragile child.
Yes, lots of people have large families.
Yes, lots of people have multiple children with special needs.
But I don't know any other people who have a large family with lots of kids with special needs, some who are medically fragile, with one who is terminally ill?
If there are, would someone please point me toward those people? I REALLY could use a friend, someone who'll say, "This totally sucks!" along with me. I know people don't know what to say to someone like me, but I still want them to say something - the silence is deafening.
This road I'm on is lonely.
I just want to feel like I'm not on it all by myself.
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.
Although I have several nieces and nephews on my husband's side of the family, on March 22nd, 2011, my sister gave birth to the first niece I was related to by blood, Delaney Rose.
I was a very proud Aunt.
Four days after Delaney Rose was born, my family of four traveled across the state to meet our niece/cousin for the first time.
I could hardly contain my excitement! My girls were also excited to meet and hold another baby cousin.
Delaney was wide awake for the first couple hours we visited; she looked directly into our eyes and I felt in my heart that she was an old soul. The depth of emotions in such a new life was surreal.
A few hours after we arrived, Delaney fell asleep on my husband's chest.
As we left my sister's home that day, we felt so lucky that we could spend those hours together. Little did we know that day was the only time we would have with the sweet, bright baby girl we knew.
That phenomenal day left a baby-sized hand print on my heart I will always carry with me, just like the day I experienced connecting with my baby nephew 8 1/2 years ago.
Three weeks later, Delaney went into cardiac arrest due to three (two undetected) defects in her heart and suffered massive brain damage.
After ten days in the NICU, Delaney was released from the hospital and placed on home-care hospice. There was nothing more the hospital could do for my niece. Among so many other challenges, Delaney could not suck, spit-up, swallow, see, or hear. My sister and brother-in-law's life changed dramatically.
We had no idea what the next week, month, or even the next day would bring, but my little niece didn't give up without a fight.
In light of my sister and brother-in-law calling each other by their first initials, I started calling my niece "Tenacious D." Yes, I'm a big fan of the band, but my niece fit this nickname so perfectly, it was indeed a tribute in more ways that one.
Over the next eight months, my niece taught us just how extraordinary the gift of tenacity could be, as well as the importance of:
and embracing every moment of life we have with our whole heart.
On January 15th, our little Tenacious D's fight on earth ended.
As tragic as this situation is, Delaney touched the lives of so many people over her short life. I truly believe that my niece has been given the most radiant wings as she is greeted by angels, young and old, I already know are in heaven.
My little Tenacious D will always remain a part of my soul and in my heart. Delaney's life will be a constant reminder to embrace my own children as well as the people I love: family, old friends, new friends and even people I never would've known without my niece - a little tighter.
I hope my niece's short life can inspire you to do the same.
In this month of love and hearts and all thinks pink and sparkly, as a part of our quest for Internet Domination, we want to know: What is Love? What do you Love? Have you felt Love?
Join us as we celebrate Love.
Roughly one of every 115 babies are born with a congential heart defect.
This is Cora's Story.
I spend a lot of time talking about hearts every month, especially in February. When my daughter died of an undiagnosed heart problem, I became a heart-cause warrior. In fact, I wrote the introduction to this month's Spotlight on Hearts right here on Band Back Together.
I spend so much time talking about the anatomical heart, heart disease, heart conditions, baby hearts, big hearts, tiny hearts, broken hearts, repaired hearts, and transplanted hearts, I decided to take a break to talk about that other type of heart - love.
My husband and I were engaged when I took a pregnancy test in 2009. It was Easter Sunday. We moved up the wedding to that August, and by December, I'd both given birth and said goodbye to my daughter. What a first year of marriage, right?
I remember the first few days and nights, I was afraid to touch my husband. I remember thinking when I was curled up in bed that he might die if I touched him, so I lay next to him curled up, wanting to hug him. You have to understand, my daughter had just died unexpectedly in my arms while I nursed her. Some part of my psyche thought my touch was lethal.
I got through that, thankfully. I remember the first time we made love, I cried after. All I could think about is how that had gotten us our baby in the first place. Thankfully, that only happened the once. (Oh man, how I hope none of my relatives are reading this! I usually don't talk about that sort of stuff online.)
I do want to talk about love after a piece of your heart is smashed out. Your heart can't love the same. A piece is missing. In some ways, I love more. In some ways, I'm not capable of the same love.
My husband and I talk - a lot. We love each other. It hasn't always been easy, but it's been more than worth it. He has my heart, and he's gentle with it. He knows that my heart can be broken and full at the same time.
Last day to vote for yourself, The Band, at the Bloggies!
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.
February 9th, 2006, I was woken up to the hustle and bustle of the nursing staff at a Seattle hospital. I was sleeping in a pull-out bed in the PICU next to my 3-month old baby boy. The same bed I had been sleeping on for the past 3 weeks. A bed only big enough for me, while my husband slept in a chair beside me. I was 21. I was scared.
The sounds I heard were nurses rolling in a hospital bed, a bed I was to sit on while they handed me my fragile baby. Once we were ready they began rolling the bed through the hospital halls; to me it was a tunnel. A darkness, but at the same time my only shot at giving my son a chance to survive to his 1st birthday.
Open heart surgery.
I honestly don't know how long this ride to the pre-op room was. I know it felt endless, but my memory says it went too fast. I know my husband and my family followed behind, but my memory has me alone, on a hospital bed, clinging to my son. I was screaming inside for him to stay strong. I was praying to a God that I wanted to believe in, but questioned his reasonings.
I looked at my boy, so innocent and unaware of what was about to happen. I cried. It wasn't fair that he was unable to comprehend the amount of pain he would wake up to. It was unfair that my sole job as his mother was to protect him, and I couldn't.
The voices in my head were louder than they have ever been. They were screaming, pleading, praying, worrying, and just outright begging. The world around me seemed so quiet. I was in a tunnel. A tunnel of emotional hell. Every fiber of my body wanted to run, to never let go of my tiny human, my pride and joy.
I had to hand him over. I personally had to willingly give my child to a man that I had only known for 3 months and trust him with my child's life. Every instinct in me said not to let go. My logical side knew it was my son's only hope.
What a cruel moment in life that was. What a horrifying memory it is to replay in my head, my son being carried down a hallway, and the only thought I could think was, "Please don't die."
I honestly cannot tell you how we got from the pre-op room back to his room where we waited for his return. I know there was family. I know we tried to keep the mood upbeat, but I also know I was still screaming inside; my insides were being shredded with every hour that went by. My heart whacks harshly against my chest just recalling those long 5 hours.
He did come back to me.
Words cannot describe the entangled mess of wires and tubes we witnessed when they rolled him into his room. I watched through a window as the nurses and doctors scurried to hook him up. When I got the okay to finally see him, I didn't even know how to touch my own son.
I couldn't embrace him: he was so tiny and there were so many wires, all I could do was sit on a stool next to his bed and place my finger on his tiny left hand. I ever so carefully leaned over, afraid of moving a wire or tube, just to kiss his forehead so he knew I was there.
He recovered. He did so very quickly. It seemed like every time we went to see him a new wire or tube was gone. After 4 days, we were sent home.
We were sent to a home we hadn't seen in almost 4 weeks. Our son would get to sleep in his own crib. My husband would finally get to sleep lying down. I would finally be embraced by my husband while I slept, still in fear, but relieved. Our oldest son would finally be able to be in his room, home with his parents.
We went to bed that night as a family. We woke up the next morning and simply said, "Happy Valentine's Day."
Here I sit, 6 years later, Valentine's Day on the horizon. The stores filled with red balloons and heart-shaped everything.
I am reminded of a heart that was once broken, but by the grace of God was mended to perfection.
I am reminded that life is a gift and love will get you through anything.
I buy heart-shaped cookies, red napkins, balloons, and boxes of heart chocolates. Not to say, "Be My Valentine," but to say "you are my hero."
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