As one of my favorite cousins growing up (he was the only boy cousin for a while!) and having the same birthday, I have followed Javier Meléndez's journey closely. He moved to Boston for college a little over 10 years ago and even though we haven't seen each other in a while, I have kept in touch with him through the power of social media. And that's exactly how I found out about the amazing journey he's in, along with his wife, Sarah Meléndez and his toddler, Rafa.
His life sounds pretty simple: He went to college, graduated, fell in love, got married and had a baby. Sounds like a perfect story, doesn't it? But he had the most amazing plot twist: He has a child, who happens to have kidney disease and he is actually the perfect match to donate his kidney to his son.
Since I know this story has touched my heart and I can definitely understand why they call Rafa "Super Rafa", I thought I would share this conversation with the Melendez family with you guys. Or as they like to call themselves, the #MelEmpire:
ambinity: When did you guys learn Rafa had a health condition?
Sarah Meléndez: While I was 19 weeks pregnant at an ultrasound. Our only hope for that ultrasound was to find out if he was going to be a boy or a girl. Nothing crossed our mind to think about anything else. When we found out he had medical issues it was very surprising and scary.
Javier Meléndez: We were so lucky we where in Boston because some of the best hospitals in the world are here. Right after that ultrasound they asked us to come over to the Boston's Children's Hospital (BCH) to see a specialist. They did an amazing job taking care of Rafa and Sarah, four months before him being born.
SM: At BCH, they knew we couldn't do anything until after he was born, but they wanted to be ready with a plan once he was born.
a: What was his diagnosis?
JM: He had something called "Posterior Urethral Valve". As he was developing in the uterus he had a blockage that wouldn't let him pee. So as he was creating more and more urine, it just backed up into his kidney and it inflated and damaged them.
SM: Basically his kidneys never fully developed. The scary thing and the difficult thing for the doctors was that when I was pregnant they didn't know to what extent the damage was done. It's interesting because babies pee in the womb, which I didn't know, and they make their own amniotic fluid. So since he wasn't peeing out, he had less and less fluid, which is what would help him develop in the womb. So instead of being in a swimming pool, he was in a bath tub. It was very scary because we didn't know if he had enough fluid for his lungs to develop.
JM: The only way you can tell if your lungs are working is if you're breathing, but you don't breathe in uterus.
SM: They saw his breath going in and out but that didn't mean his lungs were fully developed.
JM: The day that he was born we still didn't know if he was going to be born and not breathe.
SM: It was awful!
a: How did you manage all of this? I would have gone crazy with all the stress and anxiety leading to the birth!
JM: It was a tough time.
SM: I think that we really really relied on prayer and faith in unity. We had several catholic mentors and priests that helped guide us and we had each other. But it was the worst! All the help helped us carry the load but it was terrible. We never thought we would have this experience.
JM: The last couple of weeks were the hardest. Sarah actually got admitted into the hospital for the last six weeks before Rafa was born. So there was a chance that once he was born he could choke himself with the umbilical cord or cut his blood flow.
SM: I even got a heart rate monitor because I just wanted to check him all the time to make sure he was ok. Because if they saw something irregular they would be able to make an emergency C-Section. But that never happened!
a: So you actually had a natural labor?
SM: Well, they induced me at 34 weeks.
JM: He was born premature, because it got to a point where it was riskier to keep him for more than that time.
SM: I gave birth vaginally, which was great because it is much easier to heel from that type of birth. The doctors were worried that that type of birth was going to give him some type of trauma, but he did great!
a: How was Rafa as a newborn?
SM: I think it's worth saying the doctors had a little trouble stabilizing him. He stayed at Beth Israel's Hospital for 10 days and then Boston Children's Hospital for 28 days, until he was able to breath on his own. He miraculously had healthy and strong lungs!
JM: He was kicking ass! He exceeded everyone's expectations. Like, the doctors weren't expecting him to pee when he was born and the one of the first things he did was pee. They didn't know if he was going to have lungs and that was the first thing he did was cry out loud. They thought he might have to stay at the hospital for like two weeks or maybe longer but he was out ten days later.
SM: They had to keep changing his plan because he was progressing faster than they had expected. He has gained weight really well. Sometimes kids with kidney disease have a hard time growing but he... he's a fatty! It's so beautiful to be a part of his story. He's so happy and energetic!
a: You have been really public about Rafa's story, making it into local news channels. Why do you feel the need to share his story?
JM: We are so transparent and open about his story on social media, because we realize this is not about us. There's something bigger happening and even though we don't really know what that is, we want to make sure that we can share this success with everyone. We feel really called to do that.
a: When did you learn that Rafa needed a kidney transplant?
JM: We learned right away, when he was still in uterus. Even though they didn't know much at that point, they mentioned that it was likely that he would need a kidney transplant. And actually the first words out of my mouth were "Sarah, he can have mine". Immediately, I knew he was going to have my kidney and that he was going to be fine.
It wasn't until a couple of months after he was born, even though he was doing really good with medications, medications can only take you so far. So once it got to the point that they couldn't do anything more with medications, then they decided he had to go on dialysis. And once you go on dialysis, it means that you need a kidney transplant.
a: What type of dialysis is Rafa in?
JM: Basically he has a tube that goes into his abdomen and every night he gets filled with this liquid that goes in and out about 12 times every night. So all we have to do is hook him up to this machine at night and unhook him in the morning.
a: Once he gets his kidney transplant he will get off the dialysis?
JM: Yes. It's crazy! The kidneys work so quickly once the transplant is done. Like as soon as they hook up my kidney to him it starts to work. Like that day he's medical results will be better, hours later!
a: Are you going to recover quickly once you transplant your kidney to Rafa?
JM: They say two to six weeks, it depends on what kind of work you do. I get out of the hospital in like three days, but I just have to take it easy.
a: Are you going to have a normal life after that?
JM: Yeah, that's one of the amazing things about donating a kidney. The life expectancy in between someone who has one kidney and someone with both kidneys is the same. Once I donate my kidney, the other kidney will compensate and starts performing better. The loss to me is nothing, but the change that will make to Rafa's life is amazing. Even if the recovery meant I would have to be in bed for like 12 weeks, I wouldn't care.
a: How is the recovery going to be for Rafa?
JM: He will be in the hospital for at least two weeks, to monitor him very closely just to make sure everything is going is alright. Once he's out of the hospital, they want to monitor him at least once a week for like a year.
SM: Once you have an organ transplant they put you in medication to suppress your immune system with anti-rejection medications. We just have to keep everything really clean, clean our hands and do our best to keep him away for germs as much as we can.
a: Did you have any other friends or family who tested to see if they were a kidney match for Rafa?
SM: We had about 40 people volunteer and get tested for Rafa. This was just by sharing his story on Facebook back in February!
JM: I got tested, Sarah got tested, Papi got tested and also a couple of friends who wanted to keep it confidential. The really amazing thing is that I always wanted and felt like I was going to be the donor, and out of all the people who got tested I was the best match immediately. And not just the best match, a perfect match. Rafa and I had 20 for 20 the same protein!
SM: They actually told us that they usually don't see a perfect match. They are used to seeing them in identical twins, so for Javi to be a perfect match was miraculous!
JM: We actually had a lot of strangers and people from Puerto Rico testing for Rafa.
SM: I just can't believe we are sitting here today telling you this story. It feels like a dream!
a: Has he been able to catch up with other kids his age?
JM: He's delayed in his developmental milestones, but that's the usual case with kids who have kidney disease.
SM: But he's rolling around the house like crazy and pulling on stuff. He's super energetic and active and that is not always the case for kidney kids.
JM: We are really lucky we live in Massachusets. Not just for the hospitals we have here, but for the healthcare system.
SM: Also our insurance and resources. He was born to the perfect family!
JM: It's crazy because we meet people flying in from Oklahoma, Pennsylvania, people who have to move to Boston just to attend this hospital, and we live 15 minutes away from the hospital. We are so lucky!
a: When will the transplant happen?
JM: A week from today, we will find out if my kidney is good for him. If the answer is yes, which right now it's looking that there's a really good chance that it will be, we will schedule the transplant for the next month or so.
Side note: As I was writing this blog post Javi, Rafa's dad was confirmed as a kidney donor.
a: How will your life change once Rafi has a new kidney?
SM: For one, we are really excited to see what milestones Rafa starts hitting right away. We know other families who's kids recently got transplants and their kids already started doing all sorts of right away. Talking, walking and standing up more... Just generally happy kids stuff.
JM: Even more energetic than now! I think that he will be bouncing off the wall.
SM: We won't have to give him a whole bunch of medication, no dialysis and we can even take him in the ocean! Just a world's difference.
JM: And for me, I'm going to be like a half pound lighter. It's a pretty good diet plan!
a: Why do you call yourselves the #MelEmpire?
JM: Sarah actually came up with that hashtag. She was watching the TV show Empire while she was pregnant and since we are always talking about having a big family, we decided to name our family that way. We like to say that it's going to be our own little empire.
a: What advice would you give other parents who are about to give birth to a kid with health conditions?
SM: I would say that even though you may only feel fear, there is so much more beauty, goodness, positivity and grace that comes from a journey like this than you could ever imagine. There's so much more goodness that comes with a journey like this.
JM: My advice would be to always keep in mind that your child's diagnosis is not who your child is or going to be. Rafa is not his kidney disease, he happens to have kidney disease. He's his own person, with his own little personality, quirks and ridiculous things that make me laugh all the time. That is what you have to pay attention to.
If you feel touched in any way by this story, please donate to Super Rafa's GoFundMe here. All the profits will help cover his' and Javi's kidney transplant surgery. Thank you!