Monday, October 18, 2010

Something We Can All Agree On- A Guest Post

I am a mom.

I am a heart mom.

I am one of thousands of women who can relate to Jill Powley Haskins on a deeper level than most. My daughter was born with the same Congenital Heart Defect as Joshua. She is now five months old, happy and thriving. Our CHD family is large, larger than I would like. It is not a “family” I would choose to be born into, but a “family” I am proud to be a part of.

As you well know, Jill is taking a time out. Time to be still. Time to be with her husband and children and grieve the loss of her Joshua.

I’d like to take her moment of silence to introduce you to our world. Many of us first hear about our unborn child’s defect during routine ultrasounds. If you are a mom, put yourself in our shoes. You’re lying on the ultrasound table, in a dimly lit room, excited and anxious to hear if you’re having a girl or boy. Instead of hearing those words, “it’s a girl!’s a boy!...”, your ears are met with a deafening comment. “I’m sorry. I have bad news for you today. Your baby has a [severe] heart defect.” Those were the words myself and 1 in 100 mothers will encounter. It is beyond devastating.

How can a birth defect, so common and devastating, be so silent? 1 in 100 babies are born with a congenital heart defect. And yet. Millions of people are unaware of its existence or the medical advances available to the affected children. CHDs are not a death sentence. There is hope.

Since becoming a heart mom, I am inspired by my daughter and feel responsible in raising awareness for Congenital Heart Defects (CHDs). CHDs are the #1 birth defect and are responsible for more deaths in the first year of life than any other birth defect. In the US alone, over 25,000 babies are born each year with a congenital heart defect, which translates to 1 out of every 100 births. (To put those numbers into perspective, only 1 in every 800 to 1,000 babies is born with Downs Syndrome.)

As a fellow heart mom, it is my duty to educate others. CHDs are not caused by any act of the mother. They are random. We, as human beings, must do more to raise awareness. Without awareness, Congenital Heart Defects will go on as a silent killer. With awareness comes funding. With funding comes research. With research comes hope. With hope comes life.

Please help CHD families in raising awareness by educating yourself and others. Learn how you can help here. If you are so moved, please donate to the Children’s Heart Foundation and become part of the advancement in diagnosing, treating and preventing congenital heart defects. Funding for CHD awareness and research is abysmally low. For every dollar provided by the national medical funding arm of the American government, the National Institute of Health (NIH), only one penny is provided for pediatric research, and only a portion of that penny goes to support research on heart defects.

I am heartbroken over Joshua’s passing. Take this moment, in this sweet child’s memory, and RAISE CHD AWARENESS. Let us stop fighting and come together to make a difference. No matter your religious beliefs, stance on circumcision or the like, I’m certain we can all agree that the life of a child is precious, no matter the circumstance.

Raise awareness, spread hope.

With my deepest empathies to the Haskins Family,

A Fellow HLHS Heart Mom


Anonymous said...

Beautifully written, guest blogger.

I am a heart mom as well. Last night,I went out to dinner with another heart mom who lost her baby to HLHS. We are so sad about Joshua. It's time to focus on the real issues, how we can help raise awareness of the #1 birth defect in the country and how we can help fund research to save and improve lives.

Beth said...

Continuing to pray for you Jill, Shane, Hannah, and Caleb. We love you and your heart for God. Continue to rest in his arms confident that "he who began a good work in you WILL BE FAITHFUL to complete it."

Nickie said...

I'm so happy that your little one is doing well. My daughter was diagnosed with a CHD nearly 12 years ago. I can empathize to a degree- her CHD wasn't nearly as severe as HLHS and others, but enough that I was devastated when given the diagnosis and told that without surgery my daughter wouldn't live to be a teenager. She had surgery 13 days after her 5th birthday and has been doing great since. I am so thankful for that, and wish with every fiber of my being that every heart story could have the same ending.

I can't thank you and Jill and all the Heart Moms enough for sharing your stories with the world [wide web]. I truly hope and pray that with education, awareness, research and treatment funding there will come a day that CHD is a rare diagnosis.

Deanna said...

Well said. And I'm very glad that your daughter is doing so well!

Kim said...

I am a heart mother too. My son is seven years old and is doing amazing. Never heard about CHD until my son was diagnosed at two months old. He had his defect repair at that point. We are at every two years physicals. Thank you for raising awareness to this #1 killer of babies. If they would put an OX checker on my baby when he was born he would of been fixed earlier. My son was diagnosed with TAPVR.

Great work.

Kim Howard

MPdaCNA said...

Beautiful post, I have an acquaintance who's daughter is a miracle in that she's survived Fontan but it's now failed...I've lost touch w/ her but I have been blessed by the story and the triumph.

I pray for all of you that are touched by this silent killer. Such beautiful angels.

Megan@TrueDaughterofMary said...

My daughter, Mackenzie, was born with a congenital heart defect called WPW - Wolfe Parkinson White Syndrome. It is an extra wire in the heart that completes an extra circuit, which makes the heart beat far, far too fast. She was diagnosed at 3 weeks old after a horrible week of her getting sicker, weaker, and no one helping us. One ER doc told us she had a bacteria from the Atlantic Ocean! Finally our family doc, after following up with the ER, asked us to come in, as he had been lied to by the ER doc, and upon seeing her and checking her heart rate, sent us up to Children's. Within 3 hours, (a wonderful nurse put a heart monitor on her because she just felt better with it on her)they had a diagnoses.Thank GOD! After that, she had to be monitored on a halter, was on meds, and thrived. At the age of 9 she had a surgery where they killed the extra wire, and she is now considered cured. If we had not pushed and pushed for a diagnoses, she would not have lived. You have to be your child's advocate. If something doesn't seem right in your newborn (or any other child!) push until they figure it out. Sometimes you have to scream and yell to get people to cooperate. Children's hospitals are such wonderful places, and they do believe that parents have insight and instinct, but not all docs will listen so make yourself heard! We have had all of our children born since screened for heart defects before we leave the hospital. 1 in 100 - just do it, you'll rest easier knowing!
Blessings, Megan

Joie said...

I am all for "clubs", but I think anyone, parent or not, can say whole heartedly (wow, no pun intended) that being a part of this group is shattering.

I am not a mommy yet, but I want to be someday soon. I pray that I have a healthy child, as all women do.

Thank you both for talking about CHD. 1 in 100 is SO many...

Anonymous said...

Well said!

chrissy said...

This was really nice to read. Thank you for sharing.
God Bless Jill, her family and everyone else dealing with heart ache.
<3 oxoxox

Deidre said...

Very beautifully stated, my fellow HLHS Momma!!! Although being a heart mom is one of the most difficult things that has occurred in my life, I think we can all agree that becoming heart moms has changed our perspectives for the better and unfortunately/fortunately (depending upon the day!!!) with being a heart angel's momma, your perspective on life changes even more!!! Things like a dirty house, children's messy rooms, going to work... don't seem to make a difference any longer! However making sure that we spread awareness & raise money for research takes precedent in our lives because we don't wish for anyone else to walk the
walks we've had to make!!! Things such as chatty children don't bother me in the least bit any longer because I was only able to hear my Ayden's voice only when he cried immediately after his birth. I now cherish hearing my children speak, no matter what it's about or how they go on and on about something endlessly.

Going to work takes entirely too much energy because what energy I DO have should be spent upon grieving and healing. I can no longer spend my free time working on our Ayden Christopher Foundation, which we formed to help
other hypoplast families. This was my one true source of healing and although it might be good that I've returned to work (albeit part-time only at this point), in another sense it's not so good because I no longer have the energy to grieve which means I no longer have the energy to work on Ayden's Foundation, which in turn means I have no energy for healing.

My heart truly breaks for the Haskins family as I know this horrible walk all too well and I also beg of everyone to spread awareness not only in Joshua’s memory but in all of these precious angel’s memories.

HLHS angel's Momma
Ayden Christopher Boyd
8/14/10 - 8/26/10

Anonymous said...

First i want to say i feel for you all...I am a picu-oh nurse-i take care of babys like joshua every day-- i found your blog thru molly...reading this made me think of things i never think about as a nurse...makes me even more compassionate as a think about the familys more ,to want to make your time in the hospital as easy as possible...Joshua was a gift to you. remember him for all he is...he has changed your life for the better.

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