Help Hazel's Heart: A Fight for Life

Hi, our names are Josh and Loren Randolph, and we have recently become medical parents.

On January 26, 2024, our beautiful baby girl, Hazel, was born at 10:43 in the morning. She was a perfect bundle of joy and we fell in love with her immediately. We couldn't believe we had such a sweet baby girl. Little did we know that less than 12 hours later, she would begin the fight of her life.

In the middle of the night, the nurse came into our room to take Hazel for a routine newborn hearing screen. An hour later, when our hospital room door opened again, we were expecting to see the nurse returning with Hazel. Instead, the pediatrician walked in and informed us that Hazel's oxygen levels were low and that they detected a heart murmur. He knew the hospital in Tulsa would be better equipped to take care of her needs, so he said that the ambulance was on its way to come take Hazel to Tulsa. At the hospital in Tulsa, a cardiologist ran tests on Hazel and realized that something was very wrong with her heart. He gave us some good information about what he found, but ultimately made the decision to send her to the Children's Hospital in Oklahoma City, which was even more equipped to take care of her.

After a few days and several tests later, we had a diagnosis. They discovered that she had Tetralogy of Fallot with Pulmonary Atresia and Major Aortopulmonary Collateral Arteries (MAPCAs). To help supply blood to the left lung, they placed a PDA (Patent Ductus Arteriosus) stent when she was only six days old. She spent a few days in the CVICU recovering and was doing extremely well. However, while we were in the CVICU, other issues came to light. We were told her newborn screening was flagged for SCIDS (Severe Combined Immunodeficiency). The doctor also noticed her bottom lip would go to the right whenever she would cry. Because of this, the doctor ordered an MRI to rule out any neurological conditions that she might have. The MRI came back clear except for a small bone that was missing in her left ear.

At this point, we're back in the NICU working on her feeds and respiratory rate. She needed to be able to take a bottle and slow down her respiratory rate as well as lower her oxygen intake in order to go home. As we're working on this with her, the Neonatologist came to our room and told us that Hazel had been diagnosed with DiGeorge Syndrome, which is a genetic disorder. This is when part of your 22nd chromosome is missing, and unfortunately, it can cause several body systems to develop poorly. This is why Hazel's heart did not develop properly, why she is autoimmune, it's why she has a bone missing in her left ear, why her bottom lip goes to the right when she cries, and why she has trouble eating. People with DiGeorge can have other developmental delays so it's possible we will see more symptoms as she gets older.

In the last few days at the hospital, we were told that because she has Tetralogy of Fallot plus MAPCAs, that it made her condition more severe and there was a strong chance she would not be a surgical candidate. Her MAPCAs needed to get bigger in order for them to operate, and in most cases, that doesn't happen. We were sent home on Pediatric Hospice/Palliative Care. We felt like all hope was lost. Even though we were still going to doctor's appointments and giving her the care she needed, we were preparing to lose her at home. However, we were informed by our cardiologists that the road didn't end with them. There was a Children's Hospital in California that specializes in Hazel's condition and we should consider sending them Hazel's information. We are so glad we listened and got a second opinion.

On May 3rd, we got a call from a cardiologist at the Stanford Children's Hospital and heard the words, "We can help Hazel." It felt like we were talking to an angel. He told us that they can perform Unifocalization on her MAPCAs to get better blood flow to her lungs, and that they can fix her other heart issues in the same surgery if her pressure maintains. He also informed us that this surgery was their "bread and butter" and they perform almost one of them a day. People from all over the country (and world) fly to California for this surgery because they are the best of the best.

This is where we need help. We both have steady jobs, but I (Loren) have not been able to go back to work since Hazel requires around the clock care. Josh is still able to work, but not at the capacity that is eventually expected of him. He will need to return working as normal very soon. Because of this, I will have to stay home full-time with Hazel. This leaves us with a lot of unknowns when it comes to our finances.

The medical bills have already started coming in but we know more will come, and at a bigger price. Heart surgery is extremely expensive even with insurance. We also have to worry about transportation out to California and flights can be costly. We hope her recovery will only take a couple of weeks but were told to prepare to be there for a couple of months. Looking into the future, we know this will not be her first surgery, and she will need several check-ups as she grows. She also needs Physical, Occupational and might eventually need Speech Therapy as well. It is stressful enough to have to worry about her life-threatening condition, it would be amazing to not have to stress about how we're going to pay for everything. Our baby girl deserves the best care possible.

We would not normally ask for monetary help, but we have had so many people reach out asking for ways they can lend a hand. Any funds that are donated will go directly to Hazel's medical bills (current and future), transportation to get her to California and food and shelter while we're there.

We are forever grateful for those of you who have already donated to us, and especially for those of you who have prayed for her. Her story has been shared not only around the country, but around the world. She is our little miracle and we would do anything and everything to give her a long and healthy life.