Tuesday, February 21, 2012

Grown-up preemie who survived Grade 4 brain bleed

For you NICU parents out there, you know what I'm talking about. If you are not an NICU parent, this is what that means:
A Grade 4 brain bleed is layperson speak for a "Grade IV intraventricular hemorrhage," bleeding into the brain's ventricular system. It's very common in premature babies. Most brain bleeds occur in the first 72 hours after birth, and the use of oxygen (critical for extremely premature babies' survival) increases the risk. Brain bleeds come in four levels. Grades 1 and 2 are the most common, and often result in no major complications. Grades 3 and 4 are the most serious and can result in long-term brain injury (blood clots forming, blocking the flow of cerebrospinal fluid and increasing fluid in the brain) or death.
I vividly remember the nurses and doctors repeatedly telling us how lucky we were that our own 24-weeker, Chris, did not have a brain bleed. They considered it quite the miracle, since he was born at the edge of viability and had a much higher chance of having a brain bleed than older preemies.

Parents of preemies who have Grade 4 brain bleeds are not given much hope for their beloved babies' survival or "positive long-term income" (doctor speak). So when I read this story about a young woman who had a Grade 4 brain bleed and lived to tell the tale, it brought tears to my eyes...and I knew I had to pass on the story from the It's a Preemie Thing blog.

Shannon Harper, now 27, was born 3 months early weighing only 2 lb., 12 oz. and measuring 12 inches long. Because of her brain bleed, she has endured three shunts (to relieve pressure on her brain), 13 shunt revisions, mild cerebral palsy, heel cord surgery, years of physical therapy, and two "exploratory" head surgeries (a total of 18 surgeries).

She is now not only an NICU grad but also a college grad and works as an educational assistant, helping children who struggled with some of the same challenges she did.

I knew parents who faced the agonizing life-or-death decisions involved with Grade 4 brain bleeds. We faced that same decision ourselves when Chris (1 lb, 6 oz., and comparatively long compared to Shannon at 11 inches!) had cerebral edema and low flow to the brain...before he completely turned things around the next day. Parents just have to hope, when making those decisions, that their precious ones give them some kind of a sign that they are ready to go.

One of our favorite NICU docs used to say "Never trust a preemie." That has proven to be true. Some of the preemies who have the most horrific NICU stays imaginable (including Chris) have relatively unscathed childhoods and grow up to be healthy and independent like full-term kids...while others who have comparatively easy NICU courses face more challenges and developmental issues. I know other parents of preemie kids can relate that just when you think you are in the clear, something new pops up.

On those days when Chris couldn't keep a thing down and vomited everything he ate (bad reflux)...and I was worried he'd be labeled with the dreaded "failure to thrive," or when he didn't walk until 15 months adjusted (19 months actual age), or he didn't talk until he was three...I clung to every shred of hope I could find.

I love stories like these...that can offer hope to parents that in spite of the odds...and the depressing statistics...things can turn out okay in the end. You can just tell, looking at Shannon's smile, that she loves life and knows that she is a success story. Isn't that what we hope for our children?

13 comments:

  1. Replies
    1. Thank you for your courage. My daughter was a 24 weeker and had gone through the same preemie issues. She just turned one in January but corrected will be one in April. I have always wandered if my child will turn out to be independent. thank you for encouraging me

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  2. Thank you for your comment, Catherine. I thought you might like to read the story about my 24-weeker, Chris: http://marie-everydaymiracle.blogspot.com/2007/08/happy-birthday-beautiful-boy.html. I wrote it when he was 11, and now he is 15, almost 16!! He had a rough first year or two, but now he's doing great. He's a freshman in high school.

    I'd love to hear more about your little girl!

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  3. I HAVE A 10 MONTH BABY BOY WHO HAS A GRADE 4 BRAIN BLEED ONE OF THE STRONGEST BOYS I KNOW HE (BABY ANTHONY)MADE IT HE'S SUCH A HAPPY BABY ALWAYS SMILING GOO GOO GAGAS.... N JUST RECENTLY IS SITTING UP FOR A FEW MINUTES ON HIS OWN HE MAKES ME A PROUD N BLESSED MOTHER HE'S MY ANGEL ;)

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    1. Thanks for stopping by my blog, Anita. I am praying for a baby with a Grade 4 brain bleed who's still in the NICU right now. Bless you!

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    2. UR VERY WELCOME . MY PRAYERS GO OUT TO THAT FAMILY WITH GOD ALL THINGS ARE POSSIBLE ;)

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  4. This really touched my heart. My baby boy was born at 24 weeks and found out today he has bleeding in the brain grade 3-4. He is doing great on everything else and I was thinking why my son. I almost cried then I thought to myself that they don't know who has the last say so (God) and they dont know how strong my son is. I know it's going to be a long journey but Im looking forward of my son coming home to me.

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  5. U best friend had twins early one boy and one girl. The boy Jaxson is a grade 4. We are hoping and praying that everything turns out well. Thank u.all for sharing your uplifting stories.

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    Replies
    1. Excellent post! I must thank you for this informative read. I hope you will post again soon.
      Kind regard
      Neonatology Equipment Manufacturers

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  6. My son was born at 30 weeks and weighed 1490 grams. He developed grade 4 brain bleeds in his first days of life. We were given the standard talk about the unpredictability of the outcome. Long story short, he is now a 28 year old college graduate with a shining Law Enforcement career. He's smart, funny and a joy to know. He was always small, but he was tough. God bless you all struggling to understand. Have faith and stay strong.

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  7. i just gave birth to a 3 pound 7 oz beautiful baby girl on Christmas day. She has progressed a lot, then they told me she has a grade 4 brain bleed. I can only look at the positive things that have happened and only hope and pray she will be ok. She was removed from oxygen and put on cpap the second day, she then was removed from cpap on her 4th day and has not had to be put back on either! Her feedings are increased everyday and she is now off her phototheraphy light and ivs. The drs had another ultrasound done and the bleeding has not changed not worse but not better. I am truly hoping for a miracle. thank you for sharing your stories they gave me a little comfort! please pray for my little Kaylee. thanks

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  8. Excellent post! I must thank you for this informative read. I hope you will post again soon.
    Kind regard
    Neonatology Equipment Manufacturers

    ReplyDelete

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