meet lena!

Hayden's Heart is honoring Lena Gonzalez and family from Kearny NJ at our 3rd Annual NJ Golf Tournament on Friday, July 15th at Preakness Valley Golf Course (flier with details below). For more information on how you can participate or sponsor this event, please visit our website- www.haydensheart.org under the events section.

Meet Lena- story provided by Lena's mom:

Junior and I met in 2009. I already had a 7 year old and we were both working as managers for Best Buy. A year and a half later Lilian came along. Our goal was always to get married but having a house first was more important. In October of 2013 we got engaged. In April of 2014, my position at Best Buy was eliminated. I went from a 65k a year job to unemployment. We were optimistic at first. We figured I would take the summer off and the look for work once the kids went to school - As a retail manager I was never able to enjoy weekends and holidays so I looked forward to that.

In June we found out we were pregnant with Lena. There were NO complications with my pregnancy. I went thru all types of testing because of my age (I would be 35 when I had her). Everything came back normal. Lena came into this world at 9:11am on March 3rd, 2015. She was born on her due date. She was healthy and happy and had her eyes wide open from the minute she was born. 2 days later we went home during a snow storm. Everything was great.

Money was tight so I started sending out my resume and applying for jobs when Lena was about 2 1/2 months. The plan was to start working as soon as possible once she turned 3 months. I had an interview to run a Samsung stand alone store set up for June 10,2015. They recruited me so I was feeling pretty confident.

On June 4, 2015 nothing was going right. I woke up feeling tired. I was "off " all day. We had furniture being delivered that day so I was trying to prepare for that. The furniture came and one part was broken. It took forever to try to fix it so that at least it could be used until the new one could be delivered. Lena just had a bottle so we left to get Lily something for lunch.

It was about 2pm. We went to Wendy's in lyndhurst. I got Lily a happy meal and myself a strawberry lemonade. I was on the Bluetooth with my mother as I pulled out of the drive thru. My plan was to pick up Aiden from school then stop at foodtown to get something to make for dinner. Lily had fallen asleep and I was complaining about the furniture when I heard Lena cry out. Lena is a fairly quiet baby and only cried when somethings wrong. I tried to get Lily to wake up and make sure she was ok. She wouldn't wake up, which is odd seeing she's such a light sleeper. I decided to pull over and check on Lena.

When I did she was turning blue and gasping for air. I ripped her out of the car seat and started hitting her back thinking she was choking. I blew air into her mouth while I called 911. There was a guy walking by who asked if I needed help. I begged him to get someone to help me. Then Lena went limp in my arms and all of the color drained out of her. I was screaming at the 911 operator to help me and he told me to do cpr. I've never done cpr in my life but I swear to you I was doing it with Lena on the front seat of my car before they even told me how to. I stared at her lips the whole time. Finally I seen them turn pink. When I looked up the ambulance was there and I handed her to an emt and prayed.

The emts took her into the ambulance and I didn't know what was going on. I asked if she was ok and the supervisor told me she had no pulse and needed to get to hospital immediately. I was weak. A police sergeant drove my truck with me and Lily screaming the whole way. The chief of police not only drove the ambulance with Lena in it but he also called ahead to North Arlington and Belleville to clear a path. We made it to Clara Maas in 4 minutes.

When we arrived at Clara Maas I jumped out in the parking lot and ran carrying Lily to the emergency room. The first thing I saw was one of the emts crying against the ambulance and a nurse was rubbing his back. I thought she was gone. I saw the supervisor and he told me she was crying. I almost ripped his arm off in excitement. As soon as I got into the hallway, I heard her. I almost collapsed from the relief. She was crying.

Clara Maas had no idea what was wrong so they transported us right to Saint Barnanbas. We got there around 7pm. They had several doctors come see her and no one could tell us what was wrong. All we knew was that she suffered from sudden cardiac arrest and her heart went into vfib. The one dr from Saint Barnanbas couldn't believe that so he called for the actual print out from the ambulance. They set Lena up with a holter monitor and an eeg. I watched her sleep all night. At 7am the cardiologist showed up. He did an echocardiogram and said he saw a "slight issue " with her left ventricle. He said he would call some colleagues in New York and Chop. At 12 noon the nurse told us we were going to Chop. The team was already on their way.

We drove down separately from Lena so we could go home and get some stuff. When we arrived we spoke with Dr. Shaddy. He assured us we would have an answer and solution sooner rather than later. All types of tests were done and everything was sort of a blur.

I don't think we really recognized the magnitude of the whole thing until the nurses started telling us they couldn't believe the emts were able to shock her out of vfib . No one could believe it. We found out later that they originally shocked her with 15 Jules and nothing happened so they did it again with 30 and she started crying.

At chop we found out that her Ekg's showed that she has Wolff Parkinson white syndrome, which is a condition where people have extra electrical pathways in the heart which can cause it to "misfire". They also noted the dialated left ventricle. Her ef% was about 30. They made plans to do a cardiac catheter and an electrophysiology study. The plan was to use the same cath for both. They told us it would take about 4 hours and if they could close the extra pathway,they would.

About 5 hours later they came and got us. As soon as they put the cath in , she went into vfib. They had to do chest compressions and shock her back again. Most people who have WPW have 1 extra pathway, Lena had 3. They were able to ablate those pathways. The hope was that the ablation would stop any issues and instances of cardiac arrest the plan was to repeat the Cath in 2 weeks to see if they "fixed" it.

During the second cath, they induced vfib and her heart went right into it. With that they decided that she would need an ICD for the rest of her life to prevent sudden death from vfib. We were devastated that she would need this but so thankful that it meant getting to have her here.

On June 24,2015 Lena had her ICD implanted. It was implanted in her stomach due to lack of space and options. The leads that go to her heart have additional slack coiled so she will be able to grow some time with it. We're hoping she gets to at least 6 or 7 before it needs to be replaced.

On October 18, 2015 Lena was napping on the floor next to her brother. She started crying uncontrollably. I picked her up and held her for a few minutes and she calmed down and fell back asleep. Later that night we were in bed when we heard her stomach beeping. We called chop and found out that her heart rate went up to 452 beats per minute for 9 seconds before she was shocked out of it. Her meds were adjusted and she has not had a shock delivered since.

Longest story ever short, even though there's a diagnosis for Lenas heart issues, they don't know why her heart goes straight into vfib. They're doing all types of genetics including cascading genetics from Junior and I.

Social Security Disability help for families with a child with a CHD

Thank you Social Security Disability Help for providing this insightful article for our heart families:

Caring for a child with a congenital heart defect can be an emotionally and financially turbulent experience, and it may seem like there’s not much help. However, your child may be eligible for disability benefits based off of your income and resource levels.

Supplemental Security Income

We’re fortunate in America to have programs to help in these situations. Part of our social safety net is the Supplemental Security Income (SSI) program, which provides financial assistance to families who need it. It is managed by the Social Security Administration (SSA), and it’s there to help.

SSI was designed to help families that have extraordinary expenses related to a disability, and also don’t have the income to pay them. That means that when you apply for SSA, the SSA will look at your income as well as your medical needs. The SSA case worker will decide if you’re eligible to receive benefits, and how much. Typically, if you or a spouse earn a living wage, you may not qualify for SSI benefits.

The SSA maintains a list of all disabilities that can qualify a family for SSI benefits. This list is called the Blue Book. When you apply for disability benefits, the case worker will compare your application to what’s in the Blue Book, and use that information to see if your child’s condition qualifies them for benefits.

A congenital heart defect can qualify your child for disability benefits, but it’s important to understand how the application works, and what the case worker is looking for. Even if your child’s case doesn’t quite fit the Blue Book guidelines, it may still be possible to qualify for SSI.

Understanding the SSA Blue Book Listing for Congenital Heart Defects

The entire Blue Book can be viewed online. It has separate sections for Adult and Childhood disabilities. The listing for a childhood congenital heart defect is available under section 104, Cardiovascular System-Childhood

As you can see, the criteria are very technical, but quite broad. High blood pressure, low O2 saturation, high hematocrit, and several other symptoms can all qualify a child for disability benefits through SSI.

If your child suffers from a congenital heart defect, ask your pediatrician for documentation of their symptoms. The doctor will likely already be familiar with the requirements for SSI benefits, but it can be helpful to print out the listing and bring it on your appointment to be sure.

In addition, a heart transplant automatically grants benefits for at least one year, as does any heart condition that requires surgery under the age of one year.

If your child’s condition does not quite exactly fit these criteria, but does prevent them from engaging in typical childhood activities like going to school or playing with friends, then they may still qualify for benefits. Ask your doctor for a letter describing their symptoms and how it interferes with their daily life, and include it with your SSI application.

How to Apply for SSI Benefits

To get started applying for SSI, visit the Social Security Administration website. The website provides a checklist of the exact documents you need to provide, including medical documentation from your pediatrician or other medical professional.

The SSA does not accept applications for SSI benefits online, so you would need to schedule an appointment at your local SSA office. You would need to bring everything on the checklist to your appointment with the SSA to ensure a smooth application.

meet hope!

Hayden's Heart will be honoring Hope Goulet and family at our 4th Annual Pennsylvania Golf Tournament on Friday July 22nd at the Wynding Brook Golf Course (see full flier below). More Information on how you can attend or sponsor this tournament is located on our website under the events page. (www.haydensheart.org)

Meet Hope!! (story provided by Hope's family) 

Hope Layah Goulet was born on May 1^st, 2015. She was born at 7 pounds and 4.2 ounces of perfection. We found out during our third anatomy scan, during pregnancy, that Hope would be born with a rare heart condition. They diagnosed her with Truncus Arterioses. This meant that her aortic artery and pulmonary artery had grown together to make up one artery. Doctors told us that she would be born in critical condition and in need of open heart surgery. That day, we named our precious baby Hope.

Her father said that we should not be scared, that fear was the opposite of Hope.

When we went into labor, I had to be flown in a jet to Seattle, Washington to the University of Washington, where we gave birth. At that point, Hope had to be transported to Seattle Children’s Hospital by ambulance, a special ambulance, retrofitted for babies and young children.

She had open heart surgery at four days old. They put in a replacement artery in order to give her a pulmonary artery. She fought hard and was and is a very strong beautiful little girl. They had to leave her chest open after surgery, it was closed four days after the surgery. Hope was released from the hospital to come home at 19 days old.

She has grown into an inspiration, both vibrant and strong and a fun little baby girl to have the pleasure of being around. At this time Hope has a valve from one of the arteries that is no longer working. This causes blood flow being pumped out of the heart, to flow back into the heart. Her heart could become enlarged and she could go into heart failure, the valve needs to be replaced. Doctors are really hoping that she will grow enough to be able to do the valve replacement and replace the fake artery at the same time, so as not to have to do an extra open heart surgery. Right now, Hope is nine months old, weighing 16 pounds.

Hope has learned to crawl and is learning to walk and says a few small words. She has a personality that really stands out and grabs ahold of every ones heart. From the outside looking in, you would never know this wonderful baby had so many medical issues going on. Because the artificial artery they used will not grow with her as she grows, Hope will continue to need this artery replaced through open heart surgery.

Doctors estimate that Hope will need about four more heart surgeries until she is a teenager. She has stayed strong, and by all accounts, appears as any other baby would. She has the cutest laugh, a beautiful smile and loves snuggles. Her favorite movie is Mickey Mouse. She gets so excited when he comes on, she kicks her legs, gets wide eyed and smiles and makes these fun joyful screams. She loves her new found voice!

Hope’s heart condition and medical needs have definitely been trying and stressful, but more than anything, she has brought both of her parents’ families together in an unbreakable bond. She has taught us to rely on faith, to believe in miracles, to love each other and treasure one another. She has brought so much joy into our lives. We pray to God that He keeps our baby girl healthy and strong, and happy as can be.

half of my heart is in heaven...

I was a mother for four years before loosing Hayden. Like any other holiday, I would look forward to Mother’s Day with happiness and excitement- to spend the day with Jackson and maybe if I was lucky, not have to cook or clean for the day! I never thought about the pain others could possibly be experiencing on that day. That somewhere there were mothers with empty arms, broken hearts and shattered dreams. Until loosing Hayden, I was naive and I guess I thought I lived in this world where bad things like this would never really happen to me or anyone I was close with. Loosing a child just seemed wrong. Impossible. Unnatural. The whole world seems confused by child loss- what to say, how to handle it- what to even call it. There are words for every other type of immediate loss- when your parents die you are considered an orphan, when your spouse dies you are a widow. But when your child dies, there are just no words to even express the pain, the unnaturalness of it is so great that a word for it doesn’t even exist.

When I was growing up and before I had my own children I knew three kids that died. One was preteen and died in a car accident. The second was in his twenties and died of an overdose. The third was a 5-month-old baby who died of SIDS. All excruciatingly tragic and I remember being at their funerals wondering how that mother was still standing?? I just couldn’t grasp the loss of a child and again thought it completely rare and unnatural- knowing it would never happen to me or anyone I was close with. And even after having Hayden and his heart condition, I was still living in a naive world where I truly with all I had never imagined he would die.

Mother's Day was one of the only holidays we actually spent with Hayden. That year, we had been inpatient for exactly a month. Mother's Day morning the charge nurse, Colleen, came in and asked me if I want to go home! I was in utter shock- we were still in the CICU and discharge rarely happened there. We had no warning during rounds that we might go home on Sunday, as they rarely discharge on weekends. But, after being in the hospital unexpectedly for a month, and only having been home with my newborn for 10 days before we were readmitted, missing my three-year-old, and returning to some sort of normalcy of life I of course immediately started crying and packed my bags!

A couple hours later we packed the car with all of our belongings which happened to be a lot because we weren’t planning on going home, and being there for a month I had all kinds of clothes, toiletries, bed stuff etc. Luckily, we ended up fitting everything in the car along with our family of four. I remember riding home in the back seat between my two sons thinking it just doesn't get any better than this. I remember thinking at that moment that I probably will never experience another Mother's Day as powerful as this one. And, four years later, that still stands true. We got home that afternoon and I remember going out on our deck holding Hayden and watching Jackson play. The neighbors all came over to meet him and it all just felt so magical and perfect. The image of that day is etched in my mind forever and I am so thankful to have had one Mother’s Day with Hayden that I will always cherish.

The last three Mother's Day since loosing Hayden have been so tough. I want so badly to enjoy the day with my three living children- and trust me I truly do give it my all. But, for the past three Mother's Day's, I have woken up sad, with tears flowing. I will forever be thankful and grateful for my three living sons who make sure those tears and sadness don’t last long but throughout the day my chest aches for Hayden- my mind can’t help but fixate on what life would be like with him still here. I struggle with being around anyone else but my boys and Rob- not knowing throughout the day when I won’t be able to hid my pain and the tears will escape my eyes again.

For me, Mother’s Day is a day to celebrate my children, my greatest accomplishments. I want nothing more than to be surrounded by my kids, being thankful to have been given the greatest gift of becoming a mother where I learned what true unconditional love really means. I was 21 when my sister had her first son and I remember saying ‘How can I love someone so much I just met?’ I remember my sister saying ‘Wait till you have your own’. And she was right- the love I have for Jackson, Hayden, Hudson and Greyson started way before I even met them. The minute I knew I was pregnant my love began to grow. By the time I finally held them in my arms, my heart was already bursting with so much love- and every day it somehow grows stronger.

So how does a grieving mother survive a day of honoring and celebrating her motherhood when her heart is bleeding at the absence of one of her babies? For me, I do the same things I do on other tough days and holidays- I allow myself some time to grieve, find a way to honor and remember him, and smile through my tears through the rest of it.

The first Mother’s Day without Hayden we started a garden in our backyard and every year since, Jackson and I have gone together to buy the flowers for his garden and we spend Mother’s Day planting his flowers and grooming his garden. It feels nice to be near him in that sense and doing something that will be a beautiful sight for the next few months.

Having a void of Hayden not here to wrap my arms around is a pain that unless you are a grieving mother you just can't understand or describe it. My heart bleeds for all who are suffering the loss of our children this Mother's Day and every day. My hope for you is that you know that whether your angel is your only child, or one with siblings, you were, are still, and always will be a mother. That as mothers we do everything in our power to protect them, care for them, and love them and although our babies aren’t with us, that doesn’t mean we didn’t do our job to the fullest. They left this earth knowing how much they were loved while they were with us and that alone is the greatest gift we could have given them. I hope you can use this day to celebrate you- to instead of just nurturing your children, take care of yourself, too. Let your heart bleed, but look after and care for it.

There is no greater mother than that who had to say goodbye to one of her babies- a mother who watched her child take their last breath- a mother who has to walk this earth with half of her heart in heaven. If you know someone who is grieving on this Mother’s Day, I hope you will take the time to honor them and reach out to them- say their child’s name- hug them a little tighter- and acknowledge their pain because sometimes all we want is for our child and our pain to be recognized and remembered.

Hayden's Heart monthly beat - MAY

Looking back at April ~

The Pinstripes and Diamonds event was simply magical!!

Thanks to our stellar committee for creating such a beautiful, successful event and to our PA Regional Board Members (Becky, Shannan and Tatum) for spearheading its success!

I am in awe of the support from not only our committee, but also all of the sponsors, donors and attendees- without ALL of you, this wouldn't have been the perfect night that it was.

We raised almost 25K for Hayden's Heart this past weekend and are so thrilled to be able to send a portion of the proceeds to the Wade family, as well as help fund all the other ways we support heart families throughout the year through our birthday, angelversary and holiday care packages, monthly monetary donations for families in need of immediate relief, our grieving hearts care packages, our angel mama retreat, and much more!

We are growing- we are thriving- and we are grateful!!

MAY event:

Mother’s Day Mommy and Me- Paint for Hayden

Hayden’s Heart is hosting its first painting event! This event is this coming Saturday, May 7th from 3-5pm at The Craft Clique in Rutherford NJ. Cost for this event is $50 and includes painting supplies for two as well as appetizers and drinks. Proceeds from this fundraiser directly benefit our 2nd Annual ‘Healing of the Heart' retreat for mamas of heart angels. (More information on this amazing event can be found on
our website under the events page.)

Please join us with you daughter, son, niece, nephew, mother, grandmother- whomever you wish to celebrate this Mother's Day with! You and your partner will each receive a canvas and painting supplies to create a wonderful keepsake and masterpiece (picture below)! We will have raffles, food, and drinks and look forward to having lots of fun, making memories and raising funds for this awesome event!



Please email ady.dorsett@haydensheart.org to reserve your spot- SPACE IS LIMITED!!! (Payment instructions will be sent once we receive your email)

Summer Golf Tournaments:

REGISTRATION DETAILS ARE POSTED!!

New Jersey- Friday July 15th
Pennsylvania- Friday July 22nd

Registration information and other tournament details for both events are now up on our website under the events page!! (www.haydensheart.org)

Be the Difference!

Thankful for this company who donates a portion of the proceeds from every shirt sold to Hayden’s Heart each month!! Please check out their website!

Save the Date!

Our 1st Inaugural ‘Heart of Gold Gala’- Friday September 30th in Wood-Ridge, NJ! More information on purchasing tickets for this event coming SOON!