The gift of life for Baby AlexFree Access

CHD Awareness Week


Pictured is Alex Martinez on Feb. 7, smiling and playing. CLARISSA MARTINEZ | COURTESY PHOTOS

Pictured is Alex Martinez on Feb. 7, smiling and playing. CLARISSA MARTINEZ | COURTESY PHOTOS

Alex Martinez, lovingly known as “Baby Alex” to his family and the community, is a true fighter. The son of Clarissa and Anthony Martinez of Pleasanton, Baby Alex turned 6 months old on Feb. 5, a little more than a week after receiving a heart transplant.

He is the grandson of El Castillo owners Isabel and Ray Rodriguez and has one brother, 9-year-old A.J. Martinez.

This week, Feb. 7-14, marks National Congenital Heart Defects (CHD) Week, which brings awareness to the prevalence of CHD and the need for research and access to quality care.

Baby Alex was born Aug. 5, 2019, and his 2-month check-up followed on Oct. 5. After Baby Alex received his shots, his doctor detected a heart murmur. Clarissa and Anthony were told it was nothing to be alarmed about, but that they needed to see a cardiologist. They were scheduled to see one in November, but a call came in sooner to see if the family didn’t mind going to the La Cantera location on Oct. 9, even though it was far. Their lives changed on that day, as it was during that cardiologist appointment that the family learned Alex was going to be admitted to ICU immediately.

Baby Alex is shown with his parents, Alex and Clarissa Martinez on Jan. 28. CLARISSA MARTINEZ | COURTESY PHOTOS

Baby Alex is shown with his parents, Alex and Clarissa Martinez on Jan. 28. CLARISSA MARTINEZ | COURTESY PHOTOS

Baby Alex’s type of CHD is mitral valve stenosis with regurgitation.

“They didn’t want us to touch him anymore because of the defect that he had. They didn’t know how he was alive when we were at that appointment,” said Clarissa.

The parents were instructed to put Baby Alex in his car seat and try to leave him alone.

“They were so scared that something would happen to him while we were there,” Clarissa added.

“It was pretty scary. So since Oct. 9, me or Alex have not been home.”

Alex’s first two openheart surgeries were in San Antonio. During the first surgery, doctors tried to repair his mitral valve. However, it didn’t work, as he still had a leak in the valve. He underwent a mechanical valve, called a St. Jude’s mechanical valve.

“He had to have the little infant-sized one. They told us with that, he’d have to live on blood thinners for the rest of his life, as long as he had that mechanical valve in,” Clarissa said.

 

They remained in San Antonio for a month after that surgery. They had already signed the discharge papers when their doctor ran down the hall, informing the Martinezes they were not going to leave yet. Clarissa, Anthony and Baby Alex were being sent to Houston.

The family arrived in Houston at the beginning of November and were told a transplant work-up would need to be done to see if Baby Alex qualified for a heart transplant.

“There was no other surgery that they could do for him to help improve his heart function,” said Clarissa.

They stayed in Houston for two weeks. The plan was that after the work-up was complete, the family would be discharged. Clarissa informed the medical team that Baby Alex was not responding the way he usually did. Alex was not eating and sleeping all day. They started him on the medication Milrinone which brought him back to his normal self. Being on the medication required Baby Alex and the family having to stay at the hospital until he could receive a heart.

 

“He looked perfectly fine. Everybody said that you couldn’t tell he was sick. When we got here, he was at 28% heart function, then it went all the way down to 18%. So his heart wasn’t any good, but at the same time, that medicine is what kept him alive.”

Clarissa’s phone rang at 4:24 a.m. on Jan. 27, with no caller ID. Anthony now had a job in Houston and began working nights, so he comes home about 3:30 a.m. They had been up talking and had just fed Alex.

“I answered it and that’s when they told us that they had found a heart for Alex. We didn’t go back to sleep at all that day,” said Clarissa.

She thought it all went by quickly, especially compared to what they had seen other families go through.

“Alex’s was super fast. We found out at 4 in the morning. They literally pulled him out of our arms at 10. They took him and he was off to surgery,” Clarissa said.

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They didn’t get to see him until 7:30 p.m. The family received hourly updates through an app on their phones.

More on the transplant process

An in-depth background is required to qualify for the transplant process. They had many appointments and met many doctors all week long– transplant doctors, surgeons, social workers, hematologists and others. All of the findings were put into Alex’s medical record, with the doctors then going before the board. The board then decides if one is qualified to receive a heart or not. Baby Alex was qualified, starting out as status 1B on Dec. 4, which is second priority.

“You won’t be first, but you’ll accumulate time,” Clarissa said.

The patients are put in by Social Security number, without names. Baby Alex was in the age group 0-1, which goes by weight. He can always get a smaller heart, but cannot get a bigger heart, Clarissa explained.

“They bulked him up pretty big. They wanted him to get so many calories a day. It’s a big process and it’s hard.”

On Dec. 21, the Martinezes notified the doctors that Alex was sleepy and not eating again. His Milrinone medication was increased, which is what qualified him to be placed on status 1A, top priority. They hoped he would get a heart soon, as you can only increase his medication so much, before he would need a different mechanical device.

Six weeks later Alex received his heart, on Jan. 27.

Clarissa found receiving that call to be a mix of emotions.

“It’s a bittersweet moment, because at the same time you know that another momma and daddy are losing their baby, but they are gifting your baby with life again. So it’s sad, but you’re happy at the same time. It took a little while for us to grasp that, but when we got to talk to another parent that had already given the gift of life for somebody, it was a lot easier. We don’t really know that part of it, how it would feel or why you would choose to do that. I got to talk to somebody that had already done that and it was a lot easier to understand and to know their feelings toward it.”

The Martinezes are hoping that the donor family leaves a letter to see if they would like to hear Alex’s heartbeat.

“We hope to get to meet his donor family one day. We’ve already made up our minds that we’re going to celebrate that baby’s birthday on Jan. 27, because that was his heart day.”

A Go Fund Me account has been established under “Baby Alex’s Heart Transplant.”

So how much longer will Alex require hospitalization?

During the transplant process work-up, doctors told the Martinez family that this is not a lifetime solution.

“We’re just trading one disease for another. This will not be his only heart transplant in a lifetime. He will need another one.”

Doctors estimate that Baby Alex will receive five- 15 years of life out of this recent transplant.

“They can develop other diseases such as coronary artery disease. They can get cancer or form blood clots in the different arteries around the heart, causing them to be hospitalized again.”

Clarissa and Anthony have met people at the hospital who have only had their heart for four years, who are back waiting for another heart.

“They tell us it is not a lifetime fix, but it is giving him life again compared to what he did have, because he wouldn’t have life if he had the other heart.”

With this recent transplant, once they bring the family back up to the hospital floor, not ICU, they have to stay for three months. They will be on the floor for a month and then once they are discharged, they have to stay another two months within an hour from the hospital. They will have to live in a hotel or find an apartment and won’t be able to go home.

Once that happens, they will be released to go home and then Baby Alex will have to come in once a month to get checked.

With the many calls, texts and messages Clarissa receives, she has found writing in her blog to be a good way of providing updates. She refers people to the Facebook page, “Baby Alex’s CHD Journey.” She also finds it therapeutic.

“The support that it gives you, that you read back from all the comments and everything, it makes it just a little easier, you know, to keep fighting for him and keep being here. Knowing he has that many Prayer Warriors out there that keep praying for him is amazing.”

Throughout their journey, the family learned that so many in the Pleasanton area have had heart problems, which they didn’t know about. They found out there is a whole community that has CHD, an issue once so foreign to them.

In her blog, Clarissa also shared the comfort Baby Alex receives from grabbing hold of her finger. After his first surgery, she placed her finger near him to see if he would grasp it, as he seemed so out of it.

“He opened his eyes and I have a video of him grasping my finger. He would just squeeze it real tight and then he would look. I guess it comforted him enough to where he started to fall asleep, because we weren’t able to hold him for the whole entire month that we were in San Antonio, until maybe a week before we were going to go home from there.”

Now, each time he gets an echocardiogram, Clarissa puts out her finger and he reaches out for it. Most babies don’t sit still through an echocardiogram, but Baby Alex does.

“He is the strongest baby ever. He just sits there. He’s so calm. But when he gets mad, he will let you know.”

On the plane ride to Houston, Alex also remained calm, via the stateof the-art Kangaroo Crew transport service. Clarissa found it scary, but Alex slept the entire time.

The family also relies on their faith heavily to get through it all.

“Our faith grew a lot when we were here. It’s been crazy. We’ve prayed and we’ve asked everybody else to pray for him. I think with all the prayers… there would be some days where he was real sick on us, where he wasn’t keeping his feeding down. He just wouldn’t wake up some days. We would ask everybody to pray and the next day it would be totally different. We do say prayer is powerful. That’s what we prayed for, for him to receive a heart.”

Clarissa met a couple of moms that were going to Lakewood Church, Joel Osteen’s church. She started going with them and requested prayer. Clarissa met Joel Osteen’s mom Dodie Osteen, who prayed with her. Dodie told Clarissa that she just knew she was going to get to meet Alex when he was 8-months-old.

With all the expenses the family has, they have learned to prioritize things. For example, what bills can be paid and what has to wait. In Houston they pay $13 per day for parking, whereas in San Antonio it was free. She would like to tell other parents, if you can’t pay cash, don’t buy it, because you never know what can happen in the future.

As Clarissa explained, in the past they lived comfortably and could go places. Now they really had to learn how to budget.

“People don’t realize how much your life changes when you stay here for this long.”

They are extremely thankful for all the support at the hospital and the community.

“They just love Alex. The doctors tell us they kind of save time just for Alex’s chart. They spend 15 minutes talking about him before they even get to his chart.”

A.J. is really close to his brother and calls in the morning, after school and in the night before bed. He and Clarissa’s niece sing to Baby Alex and tell him about everything back home.

On Friday, Jan. 31, Clarissa shared Alex’s pain was under control. Some of the lines were removed, as he had so many IVs. His list of 27 mediations was reduced to five. The rest are oral medications. Alex will live on immunosuppressant meds, similar to chemotherapy drugs, for the rest of his life. Since he won’t have an immune system, he will have to wear a mask for the rest of his life when the family goes out in public.

On Tuesday, Alex had a biopsy done on his heart to check for rejection. Clarissa explained this is standard procedure in which a catheter is inserted into a vein. Tiny pieces of Alex’s heart will be tested for possible rejection. He will need to have at least three before he can go home. The tests have to come back clear in order to be released from the hospital. Also, Alex will have to continue having these tests at least once a year after they are cleared to go home.

As a result of their experience, Clarissa and Anthony are now organ donors.

“You don’t know how much you want others to donate organs until you need one. We expected someone to give this to us, so just to know that if we’re not going to use them, when we’re gone, we would love to give the gift of life to somebody else.”

CHD FACTS

•Congenital heart defects (CHDs) are the most common birth defects in the United States, aecting approximately 1 in every 110 (about 40,000) babies each year. One in 4 of them will need surgery or medical intervention to survive. •For many forms of CHD, surgery is not a cure. Congenital heart disease is a lifelong condition requiring specialized care, and often additional surgeries and medications are needed later in life. Most causes of congenital heart defects are unknown. *Source: Congenital Heart Public Health Consortium.

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