An Arranged Friendship by Stacey Lihn

Most of you have heard of an arranged marriage, but Zoe was in for an arranged friendship. Fair? Perhaps not. But don't "moms know best?"

Shortly after learning of Zoe's diagnosis, in utero, I went straight to the internet. I researched HLHS and found other heart moms online. Through the wonders of Facebook, I met a handful of heart moms close in gestation and delivering at the Children's Hospital of Philadelphia. Before we actually met in person, Mia's mom, Jenn and I felt like we already "knew" each other. As our friendship grew, so did Mia and Zoe's...they just didn't know it yet.

Mia was born on April 29, 2010. Zoe was born on May 11, 2010. Both born with one functioning heart ventricle. Mia, the older of the two friends, led the way. She underwent her Norwood first and set the bar high, very high. Mia was a "rockstar" at CHOP. She recovered in record time (no joke) and discharged in 3 weeks time.

After Zoe's surgery and discharge, Jenn and I communicated often (via email, texts, phone, you-name-it.) Heart mommy support knows no boundaries!

Growing up as a child with only half a heart was not going to be easy. Jenn and I realized that, and hence, Zoe and Mia's arranged friendship was born. Mia and Zoe were already being booked for Florida beach vacations and annual trips. We knew they'd need each other as they grew and faced similar experiences. They were destined to be BFFs.

On July 25, 2010, Zoe lost her friend. I met Mia on more than one occasion, but Zoe never had the opportunity. Sure, they laid in the same hospital just a few hundred feet from each other; but they were busy battling HLHS.

The day I heard the news of Mia's passing is forever etched in my mind.

Can you imagine your best friend dying? It's heart-breaking to even think about. Someday, I'll have to break the news to Zoe that her friend, Mia, died, just shy of her 3 month birthday. Despite this, Zoe will know Mia and will grow to know her twin brother, Madden.

Many of you know of Mia, or have seen this picture of Zoe, honoring and remembering Mia on her 3 month birthday, just 3 days after her passing.


Mia's parents, Jennifer and Ray Marrone, have made it their mission to continue Mia's fight and fight for Zoe and all other families affected by congenital heart defects. They've founded the Mia Marrone Heart Foundation. One of their first, of many accomplishments, is the Mia Marrone Heart Charm. Mia's Charm is a beautiful reminder and awareness piece for heart families and those affected by CHDs. Zoe already has hers which she loves (and apparently they taste good too.)




Zoe (and I) will wear Mia's Charm with pride - to honor and remember Mia and all of the CHD angels and warriors.

If you love the Mia Charm as much as we do, you can check it out in detail through The Mia Marrone Heart Foundation, print an order formhere or by emailing a request to HLHS.HeartHugsForMia@yahoo.comif you do not have a Facebook account.

And a few more from Zoe's photoshoot...




And, of course, all of this, in remembrance of Mia Grace Marrone. We miss you little one.

Give Back and Light the Way

Ask any heart parent about the moment their child was diagnosed and they can tell you, in great detail, exactly how it happened, who was in the room, how they felt, what else happened that day. One of the most difficult aspects of the heart parent journey is that moment of diagnosis - the moment when your life changes forever. There is so much to process at that pivotal point and in the days and weeks to follow. Most newly diagnosed heart parents turn to the internet for answers and information about their child’s heart condition. Hypoplastic Left Heart Syndrome (HLHS) is, in particular, an extremely complex condition and much of the medical information available online is out-of-date and speaks of hopelessly outdated survival rates and lack of quality of life for single ventricle children. As a result, many newly diagnosed parents are left feeling hopeless and very much alone, forced to make critical decisions about their unborn child without a true understanding or complete picture of how well many of these children actually do.

I, along with nine fellow heart moms, would like to reshape the outlook for HLHS infants and children. Over the last few months, we formed Sisters by heart - an HLHS support group - to provide support and resources to newly diagnosed HLHS parents. It is a way for us to give back and light the way for another family following behind us on an otherwise very dark path. We want to give hope, to give love, to give support, and to give practically. We provide care packages for newly diagnosed parents which includes many items we’ve found useful to us along our journeys (pacifiers, mini-notebooks, specialized baby clothes that allow for tubes and wires, etc.), bio sheets on our children (there is nothing to give you hope quite like seeing an older child with your child’s same condition who is flourishing) and informational booklets and fliers providing current information on HLHS and options for newly diagnosed parents.

I know many of you who read my blog have been touched by Mia’s story and the stories of so many of her heart friends and are eager to find a way to help. Here is your chance.

Sisters by heart is comprised of 10 heart moms from various cities around the United States. We are seeking help with our initiative, either through donated items or financial assistance. (Please understand that we are not yet incorporated as a 501(c)(3) – we have not ruled this out, but it is not yet something we have pursued – so any financial contributions will not be tax-deductible at this point.) We hold Sisters by heart dear to our hearts, as we realize there is a significant need and lack of direct support to newly diagnosed HLHS parents. To help Sisters by heart or to learn more about our mission, please visit our blog at www.heartsisters.blogspot.com or email sbhmoms@gmail.com with any questions.

Please, join us in giving back and lighting the path for newly diagnosed heart parents.

From our hearts to yours,

A Million Things To Say...Everyone wants to know....Miss you Little Lady

So....I am not even sure where to begin. I have been asked several times over the past few weeks if I was going to "talk" about what happened on that sad Sunday. So here goes....We woke up that morning like any other day. She was sitting in her bouncy...playing I might add. She was actually okay the entire weekend. I had been on the phone with all of her doctors in the past week...discussing the Glenn and her reflux situation. They all told me I seemed a bit anxious and she continues thriving so let it be. On Friday, they had changed her formula to Elecare, which is a prescription to see if it would help in the healing of the esophagus from the terrible reflux. It's strange because in the week before her death I kept telling ray that we could not let her sleep through the night that she had to eat. Ray kept insisting that I not bother her and to let her get her rest.
So back to Sunday....She looked okay and I went to change her pee-pee diaper and she started to cry, well she sort of had a raw diaper rash from the new formula that was causing her to have diarrhea. So I did not think anything of it. She cried maybe 2 minutes and then stopped but I noticed she was a bit grayish and she looked terribly weak in that instant. I called for ray and told him that I wanted to bring her in just to be safe. No crazy breathing ...NO NOTHING!!!

We got to the hospital and there was really no rush. They basically took their time registering us and doing the normal routine...Sat's ( that were 86) weight and height. They were walking us down the hall to the kids ER and she was up on my shoulder kicking around. We got into the room I flipped her to the cradle hold, she looked at me and coded. I screamed for the nurse and just then the doctor made the corner. They tried to resuscitate her but were unable to do so. A regular and cardiac autopsy is being performed.

So there it is. I hate to replay those events in my head. In fact, I cannot even remember the funeral...that horrible experience is the last vision that I keep playing over and over. I just cannot believe that for doing GREAT one day it is all gone. In that moment I felt so helpless. I am sure you have no idea what I am saying and all you can do is say "I feel terrible" but the truth is No one should have to endure the pain of loosing a child. I guess some people never know what to say and they always end up saying the wrong things.

"you should be thankful you have Madden", okay well she was my child too. "Luckily she was a baby and you did not have to bury your five year old", okay but that still does not make it easy.
There are so many more that I could say but it does not make a difference. It does not make me any happier to release the pain.

Everywhere you go there is always a reminder. In Madden...every time I look at him I see her. God I miss her. All of the stages of grieving hit me all at once. I get so angry to sit here and watch my 3 year old cry and ask us why we gave her away...there is no easy explanation. He does not understand..in fact I do not understand. I can still hear her cry, see her laugh. It is just hard. It seems that every time I see a baby girl around her age it tugs my heart. I know they say it is not supposed to be easy but there is no words to even begin to explain.

For the 87 days she was here she was my everything. My hope, My dreams, my inspiration and strength to go on. I would continue going every night on no sleep if I had to. She taught me so many things about life. Life is so short for fighting and selfishness. It is hard to imagine in that moment that God already had a plan from the time she was conceived. I hate that plan but maybe in time I will See why. I just think about who she could have become and who she really looked like. It is all just gone in the blink of an eye.

I am very proud of the things I have done and the awareness that has been raised for congenital heart defects. She came into this world with me and left with me. As the priest said during her service, "Ray and Jennifer are not angel makers, they are Saint makers. Mia Grace touched more lives in 87 days than many touch in 87 years. For in my eyes she is a Saint. She brought together a community and taught many about hypoplastic left heart syndrome and the importance of congenital heart defects. In my eyes she is a saint."

It makes me incredibly happy to hear him say that but my heart is broken and I want her back. There needs to be more hearts like Mia's to bring awareness in this word and help people to realize they should live for today and HOPE for tomorrow.

We miss her so much it hurts but hopefully in time the hurt will heal and we can understand. Ray and I are going to keep the Mia Marrone Heart Foundation open and do an annual fundraiser for parents who's children have congenital heart defects and need assistance. I feel this is what she would have wanted. I plan to change the blog up a bit and discuss events with the heart foundation and to talk about grief and living through this complex journey.

We have had so many messages, cards, phone calls and we are happy to see how many people have reached out in support for us. It means so very much. We just need time. Time to cry, time to grieve, time for our other 2 wonderful kids, time for one another.

The funeral and burial were so nice, if that is even crazy to say. She looked so beautiful. You just never think you are gonna end up in an office at 30 years old buying a family tomb.

So in darkness there is light and it makes me happy that I was even able to have her for 87 days. I just wish I had her for a lifetime. It was always in the back of my mind that things could go wrong, as with any CHD child but I never thought it would be me. Guess no one ever does.

I just hope she knows how much we love her and miss her. It makes me proud to be able to show Cole and Madden how much of a hero and an inspiration their sister was. It brings tears to my eyes that I know this will be the last blog entry about her. It also makes me sad how quickly everyone will forget her. Not me....never. I have to tell you that I have gotten so many e-mails and messages telling me how I was an inspiration to them and they were so proud of the journey I decided to create for Mia but in retrospect...what parent would not have. The decisions I made were what any courageous mother would do for their child.

I miss your smell and your sweet smile in the mornings and the way you and Madden laughed at each other. But mostly, I miss who you were and I know you could have done great things for the heart community and the wonderful compassion I know you would have shown others for just simply being alive. Mia Grace I promise to keep your legacy alive and take care of others through your foundation. I am even going to try to get a job with LOPA because I value the importance of organ donation. Without you I would have never known. You have opened my eyes to a whole new world, one with a lot more compassion and selflessness and I thank you my love. It is so strange how the greatest song can turn terribly sad in an instant. I think of you everytime I hear Temporary Home.

So with a heavy heart and my closing entry about Mia...I love you baby girl and I miss you dearly I know your doing big things in heaven. Take care of all of your heart buddies and keep them free from hurt. We love you so much...Mommy, Daddy, Cole and Madden.

Pink for Mia!

Please wear pink tomorrow in memory of Mia Grace Marrone - it is her 3 month birthday.

...She fought a courageous battle against HLHS in her short 87 days of life.

You can easily participate in making this memory for her parents.

Let's show her parents, Jennifer (Cordes) & Ray Marrone, how many lives a 3 month old can touch!

Take a picture of yourself wearing pink (shirt, outfit, headband, tie, etc) - include your kids, dog, cat, entire family! You can choose to hold her name written on a piece of paper or you can get creative and spell it out however you like... take a picture of that, too! Please just participate!

Please email all photos to PinkforMia@gmail.com

{All photos will be assembled in a photobook}

Please invite ALL of your friends, regardless of whether or not you know this family personally - let's make this HUGE! Post it as your facebook status, tweet about it, blog about - just get the word out!


*** If you're on Facebook, here's the event ***

Thanks for helping create a memory!