Friday, February 3, 2012

CHD Awareness Month: My CHD Angel and CHD AWARENESS T-SHIRTS

The month of February is Congenital Heart Defect Awareness month.

Congenital Heart Defects: A malformation of the heart or the large blood vessels near the heart. The term "congenital" speaks only to time, not to causation; it means "born with" or "present at birth."

As many of you know, Max suffered from multiple CHDs.  The disease that he most likely had, is called Alagille Syndrome or AGS. One of the symptoms of AGS can be heart defects. Children with AGS as well as heart defects, have a 30% chance of living to be 6 years old. Maddox's heart was very sick. All 4 of his heart valves were extremely small and narrow, especially his mitral valve. They called this stenosis, meaning narrow. This caused his heart to have to work much harder than it should have, to pump the blood through out his body. His valves were so small, that it was causing the blood to go the opposite direction because it just could not get through such a small opening. This caused Max's heart to work so hard, which lead to the muscle thickening. After 4 months of pumping so hard, trying to get blood through those tiny valves, his heart was tired out. The muscles were thick, stretched out, and had lost their elasticity. He fought so hard, and brought so much joy in that time he was here. Even when he was sick.

I AM ASKING YOU, the person reading this, to please share Max's story at least once today. With anyone. Just tell someone that he lived, and that he could no longer live because of his heart defect that he was born with. Tell someone about CHDs. It is time to spread awareness! Find something red today, anything red. A shirt, hair tie, bracelet, necklace, a bow, anything. This will resemble and honor children born with a CHD that could still be fighting or have grown their wings. THANK YOU!!!!!!!! <3

Last year, we had hundreds of people share their photos of themselves and their families wearing red to honor Max's heart and CHD awareness! This year we are ordering shirts to help fund CHD research through the Children's Heart Foundation!

Help us honor Max and all CHD Angels and warriors still fighting their battle! Please contact me to purchase your t-shirt and thank you all so much for helping us spread awareness!!!!

You can contact me through the following emails and numbers.

You can purchase your shirt via paypal or if you are in the area you can get in contact with me. Both emails above are registered with paypal, so you can leave how many shirts and what sizes you'd like in the paypal note. Thank you all so much!!!!

This is me and Max's dad. Happy, pregnant, blissfully ignorant. I spent my pregnancy doing everything I could to prepare for this new life. I spent hours each day, for months, just trying to learn everything that I needed to know, making so many decisions and thinking about my many years I thought I would have ahead of me with my son. To parent him, teach him, love him, and care for him. Constantly reading up on what was safe for me to eat, breastfeeding tips, what products are safe, when to start solids, when to start weaning and potty training, and home school and all of these things that I didn't know I would never even get the chance. He wouldn't get the chance. I didn't think to prepare for devastation, heart break, watching your child suffer, giving your child 10 medications a day, infant CPR, hospitals, doctors, decisions, and death.

I want to go back to this. My baby was safe, healthy and happy inside of me. I had such a perfect pregnancy. I get so angry with myself for rushing it. My entire pregnancy all I wanted was for him to be here. I cried because I never thought he would come. If I would have known he was going to come and go so fast, I would have soaked up every single minute with him inside me, instead of begging for him to come.  However, I am so thankful for having had such a healthy pregnancy. Was an amazing 41.6 weeks with my precious boy!

This is us. Me and Max. At this moment, I had no idea anything was wrong with him. I had no idea that when he went to the nursery, they would hear a heart murmur, and want to take him to Rockford. My poor guy had a rough time coming out because I just couldnt get him out from under my pelvic bone. I felt bad enough about that, but I was so thankful that he was finally here. A few hours after I delivered, they came and told us that on the ultrasound when I was still pregnant, they saw that he may have had a hypoplastic(small) kidney, which is a symptom of AGS (which we found out later). We were devastated that they even thought something was wrong, and when they told us they wanted to get him to Rockford asap, my heart shattered. They released me just a few hours after giving birth and we drove up to Rockford to be with our baby. I was 15 years old, I prepared and knew everything there was to know about pregnancy, birth, and a new baby. My whole world changed when I learned my baby had a broken heart!

This is Max in the NICU. We stayed there for 1 month and learned everything we needed to know about having a heart baby! We fell in love with our precious little boy, learned his personality, and all the special techniques we had to perform to keep him alive and as healthy as he could be. We learned how to use his monitor, how to insert his ng tube from his nose to his stomach, how to draw up and give him all of his meds, and what to do in case he has an arrest. All these things scared the hell out of me, but I never thought I would really lose him. Our mother baby bond was so perfect and strong. Especially when we finally established breastfeeding. I loved him so much. Breastfeeding him allowed me to feel like I was finally able to do something for him. With how sick he was, I was finally able to give him something he liked and something that was good for him. That is one thing that I miss the most about him. He was such a messy eater, but he was always so content afterwards. He was so perfect!!!!

We were home for a little over a month with our precious boy! The best days of our lives. He was so strong! We had a perfect routine of meds, eating, school, family, doctors appointments, and sleep. It was a perfect routine that we were 100% consistent with and it worked so well for us. We enjoyed life so much while we had our precious little man! Most people complain about the little normal things that normal healthy babies do. It makes me wonder what they would have done if they would have had a sick child, that required 10 times more care. I never even thought twice about it. It was 2nd nature to us then, and we just loved and cared for our baby!

This is Max, the night we made the final ER visit, and left for Rockford Memorial Hospital, not knowing that we would never return home with our baby alive. You can tell when a heart condition is worsening, when you start to notice rapid breathing movements, labored breathing, a grunt or noise with breathing, fluid in the lungs, purple lips, failure to thrive, and low o2 sats.

We only had 2 hospital visits in those 5 weeks home, before we paid our final ER visit and never returned home. As a heart parent, when they tell you you are getting transferred, it is the worst feeling because it means something is really not okay. Seemingly little things, were huge accomplishments for Max. Things like gaining weight, growing, breathing right, holding his head up, using his muscles, were all very difficult for him, but we did so much home therapy and worked with him so much. When he did take a step forward in his development, it was a big deal!!! We were so proud of him! He worked so hard to get to where he got, so when they told us he was sick again, it was devastating!

These photos are of the last 2 weeks we had with Max, while he was breathing on his own. He had just learned to smile and almost let out a giggle. He loved to play, he started to show an interest in toys, and he was so alert all the time. During this hospital stay, we made the best out it and tried to have fun and enjoy our baby and help him continue to grow and develop as much as he could in the hospital. But for some reason, he just could not get off of the oxygen. There were 3 times where they told us we were going home, then Max's o2 sats would drop again. This was devastating every time. We had to watch our baby get poked every day, our routine got messed up by a nurse who didnt follow our schedule, and it was really hard for us and to see Max like that when we thought everything was going okay. Finally, they decided that it was Max's heart that was filling his organs up with fluid, and causing him difficulty breathing. So they sent us to Hope Children's hospital in Oak Lawn, IL. Once again, we are devastated, and just want answers and RELIEF for our precious baby! 

These photos are after we got transferred. Max was so tired and weak. I hated seeing him like that. My mom left that night and it was just me and Max alone in the hospital. Ron had a class back home that he had to attend and so he was coming the next day. Finally, Max's little heart gave out, and he went into cardiac arrest for the first time, which was the worst and scariest moment of my life. These were Maddox's last weeks.

During the time Max was intubated, my heart ached so bad. When he would cough, my chest would tighten up and I just wanted to take all the pain away for him. When he had to get poked, I would scream and cry and had to leave the room. I felt all of his pain too and I hate it so much that he had to experience this all! My baby suffered! As bad as I want him back, I know he is no longer suffering. That is the only thing I can take comfort in. Congenital Heart defects are so dangerous and bring so much pain! We need to spread awareness and continue to fund for research so we can learn more on how to save lives!

Our baby boy fought so hard! We went through weeks of hell. Being told that our son might not live to be 6 years old, to he might not be able to live for any more than a few months, to he could die any day now. Our baby was kept comfortable, but I could still tell he was fighting so hard to stay. It was his heart that failed him. He had other organ issues, but it was his heart that was the most defected. Max is 1 in 100,000 babies that did not live to see his first birthday. It is so hard for us every day, but I try to remember it was so hard for him, and he fought so hard to be with us, and he made us so happy and humbled us and made us better people! I know he would want us to continue to spread awareness to help other innocent lives like him! I am so proud of my precious little angel! He has truly changed so many lives and made a difference in this world!

Max, mommy loves you so much! I am so sorry that I couldn't fix your broken heart!!!! Mommy wishes you could be here and healthy, but that can not happen. Momma is so proud of you for fighting so hard! I am so thankful for you and for being able to hold you for as long as I did! We are so blessed to have had you in our arms for even just that short time. I feel you here with my still. I know I will see you again! Thank you for fighting so hard for momma and our family!!!!! We are all so proud of you!!!

I just wanted to share some of what Max went through and what our family went through with him. Heart defects are very serious and we need to continue to spread awareness for our future children's sake!

  • Congenital Heart Defects are the #1 birth defect worldwide
  • Congenital Heart Defects are the #1 cause of birth defect related deaths worldwide
  • About 1 out of every 100 babies are born each year with some type of Congenital Heart Defect in the United States (approx. 40,000/year)
  • Nearly twice as many children die from Congenital Heart Defects in the United States each year as from all forms of childhood cancers combined, yet funding for pediatric cancer research is five times higher than funding for Congenital Heart Defects
  • Each year worldwide 100,000 babies (under one year old) will not live to celebrate their first birthday
  • Each year in the United States approximately 4,000 babies (under one year old) will not live to celebrate their first birthday
  • The cost for inpatient surgery to repair Congenital Heart Defects exceeds $2.2 billion a year
  • Of every dollar the government spends on medical funding only a fraction of a penny is directed toward Congenital Heart Defect research
  • The American Heart Association directs only $0.30 of every dollar donated toward research. The remainder goes toward administration, education and fundraising efforts. Of the $0.30 that goes toward research only $0.01 goes toward pediatric cardiology for CHD
  • Though research is ongoing, at least 35 defects have now been identified
  • Although some babies will be diagnosed during gestation or at birth, sometimes the diagnosis is not made until days, weeks, months, or even years after. In some cases, CHD is not detected until adolescence or adulthood
  • It is a proven fact that the earlier CHD is detected and treated, it is more likely the affected child will survive and have less long term health complications


  1. Brooke, Thank You so much for sharing. We lost our son Nathan on April 14, 2009. He was 22. He was born with TGA. He had surgery at 3 months, the Senning Procedure. He did well until he was 8, then he had an unsucessful RF Ablation for V tach. He then passed of Sudden Cardiac death at 22. Is there any way to get the shirt with his name on it? Thanks, Sondra

    1. Hi Sondra! You can google to look for a site where you can customize your own shirt with Nathan's name on it! :) I think it'd be a great idea!! xxx hugs xxx