Laura Hardy-Falls, mom of Grant

Our story began at our 20 week anatomy scan where our OB was unable to get a good picture of Grant’s heart. We were sent to Maternal Fetal Medicine where they diagnosed him with what looked like to be HLHS and a narrow aorta. We were told that he would get a ballooning of his aorta once born and that we would be inpatient for about two weeks. The rest of my pregnancy I was so scared. I questioned God asking why? Why did it have to happen to us? Why was this happening? Grant was born at 35 weeks with multiple congenital heart defects (Shone-like complex which consisted of hypoplastic mitral valve, unicuspid hypoplastic aortic valve, apex forming left ventricle with severe dysfunction and mildly hypoplastic ascending aorta. 

He was taken directly to Children’s where they performed his first heart surgery that evening which was a BAS. I needed to see my baby so I signed myself out AMA and pulled up in a wheelchair to his giraffe warmer. I was in shock, I kept wondering when we were going to go to a real room until I realized Room 1 was his room and would be for a long time. Grant had another surgery for PA bands a couple days later and then a few days after that Grant had a cardiac arrest during a diaper change. He was needing surgery sooner than later but his little body needed the rest. He was able to get an LVAD (left ventricular assist device) and was put on the transplant list. While we waited Grant had a tracheostomy. This decision was tough but in the end we can say it was the best choice for us. He was able to finally get out of bed after 5 months of being intubated. The wait was long but we made the most of everyday by getting all the therapies to be big and strong for transplant. We had many photoshoots to pass the time. On 2/24/23 after 8 months of anxiously waiting we received the call that they found the perfect hero heart for Grant. After transplant was really tough on Grant. His blood pressures were tanked at a map of high 20’s-low 30’s. It just did not want to come up, they were non stop pushing epi and methylene blue the entire night. The next morning we knew he needed to be put on ECMO to give his body a rest. As we were moving stuff out of his room and ECMO was moving in, he had another cardiac arrest. We saw everything and just kept praying to God that this was not his time. They were able to bring him back pretty fast and the surgeon put him on ECMO which he was on for a week. We finally made it home a week before Grant’s first birthday. 

Unfortunately in January 2024 we were told that Grant had a tumor in his liver. The tumor was very small but it sat on top of his portal vein. He went for surgery in April 2024 but the surgeon could not successfully ressect the section needed. The surgeon told us that if he did take the left side of his liver, Grant would go into immediate liver failure and would need a transplant. The biopsy came back a few days later and he was diagnosed with Hepatoblastoma, a pediatric liver cancer that he was born with. We reached out to Texas Children’s and they advised him to start chemo. Grant did a couple rounds of chemo before we went down to Houston for surgery in September. They were able to do an ablation and successfully remove the tumor. Grant continued chemotherapy for a few more months and by November we were able to say that he was cancer free! 

Since then we have been living life to the fullest, we have taken 3 trips, met our heart donor family, and have been decannulated! Looking back I remember when I found out I was pregnant that I was so nervous that I wouldn’t be strong enough. God heard me and showed me how strong I could be. Grant’s CHD diagnosis is a rare 1% of all CHDs and his cancer diagnosis is also 1 out of a million each year. God has shown over and over again that He is the ultimate decision maker. The doctors can tell you an MRI shows he may never move his legs but look at God show off and Grant is crawling/standing. God gave me this journey to help spread hope, support, and awareness to other moms and that’s why I started Project Mom Bags from living that experience and watching others do the same. 

We are forever grateful for Dallas Children’s staff from the amazing nurses, doctors, RT’s to EVS and all in between, you all have become part of our family. 

Amber Bogardus, mom of Nolan

At 34 weeks pregnant, during what was supposed to be a routine sonogram, we learned that Nolan had a “heart defect.” Up until that moment, I had a completely normal, healthy pregnancy. I was preparing for my baby shower when my OB noticed a shadow on the scan. It didn’t look overly alarming, but just to be safe, they referred me to a Maternal Fetal Medicine (MFM) specialist.

What followed was an exhausting week of appointments, specialists, and devastating conversations. After more testing, it was confirmed Nolan had Dilated Cardiomyopathy (DCM). My world turned upside down in an instant. Doctors told us there were only two possibilities, either he wouldn’t survive, or he would, but it would be a brutal road ahead, likely ending in a heart transplant. And if he did make it? We were told to expect months in the hospital. That was the reality I had to sit with for the last four weeks of my pregnancy. And unfortunately, this is the type of information that so many of these moms of babies born with one of the many types of CHD are given as they wait to deliver.

Nolan was born via C-section after a failed ECV (thankfully). He made it through delivery and was immediately transferred to Children’s Hospital in Dallas, five miles away from where I delivered—five of the scariest minutes of our lives. We spent 4.5 months in the ICU and step-down unit, never leaving his side through countless scary nights and close calls. At just two weeks old, he was placed on the transplant list as a 1A priority. We waited. And waited, night after night, day after day, and all of the major holidays. But that call never came.

Nolan, in true fashion, had his own plan. He fought. He grew. He stabilized. And against all odds, he was eventually removed from the transplant list. While he’ll be on medication for life and there are still unknowns, he is thriving. And we are so lucky.

I’ll never forget what it felt like to live in that hospital—waking up every day in the same room, showering in hospital bathrooms, trying to eat, work, and hold it all together. It’s a special kind of experience that just never leaves you. Something as simple as a package of face wipes or fuzzy socks brought comfort in a way that’s hard to explain.

That’s why I’m so passionate about my work with Project Mom Bags. My hope is to bring even a little bit of comfort and encouragement to other moms navigating the unimaginable—to remind them they are not alone, their new normal (whatever it may look like) can be beautiful, and that miracles, like Nolan, do happen.

Emily Morrow, mom of Grayson

My story started with my very first sonogram at 10 weeks. My OB noticed an abnormality and immediately referred us to MFM and cardiology. At the anatomy scan, the cardiologist officially diagnosed my son with a severe Congenital Heart Defect. We knew at 19 weeks that he would most likely need a transplant because surgeries to repair his heart wouldn’t be successful.

Each ultrasound Grayson was still wiggling and growing, despite all of his issues with his heart. The only reason is the complete grace of the Lord because he had all the odds against him. He was born 4 weeks early and we share the same birthday! He is the best birthday gift ever.

At 3 days old, he was transferred to Children’s Medical Center Dallas to start the transplant evaluation. He was listed about 4 ½ months before receiving his miracle heart. He had a complicated journey with so many low-lows while he waited for a transplant. He struggled to breathe without the ventilator, so we made the decision to get him a tracheostomy. It was the hardest decision, but the best thing for him and greatly improved his quality of life. The entire staff at Children’s from the doctors, to the nurses, therapists, and everyone in between made a huge impact on our lives and helped get our son to transplant.

We got the life changing phone call that there was a perfect heart for Grayson on Dec 23, 2023! He is now over a year post-transplant and his heart is so healthy. He recently got decannulated and his living his best life, trach-free!

Grayson has been through more in his 2 years than most will have to endure over a lifetime. He is the sweetest gift from the Lord and a reminder that God still performs miracles, despite what medicine deems impossible. I’m thankful I don’t have to do hard things alone – that God meets me exactly where I am and is always with me. The same can be true for you, all you have to do is accept him.

I hope moms that receive these bags know how loved they are. Having to be newly postpartum and “recover” from giving birth in the CVICU is not ideal. I’m so grateful to be a part of this foundation to provide hope and encouragement to moms facing such a scary journey.