Remembering Delila and navigating loss: an Alagille syndrome family story

Omar and Valarie Velasquez share the story of their daughter Delila. This video was produced in partnership with the Alagille Syndrome Alliance.

Valarie Velasquez:

I definitely remember the day that we got her diagnosis. I remember that day was just really, really shocking because we’d never heard of it before. I was of course just freaking out because we didn’t know what it was. What is life going to look like for her? I think it was just feelings of shock and just uncertainty because we really didn’t know what the future was going to be.

Hello, my name is Valerie Velasquez, and this is my husband, Omar. We live in Richland, Washington, and we are a family of 5. We have three3beautiful daughters, and 1 of them is an Alagille syndrome angel and warrior.

Initially, our journey started when I was 32 weeks pregnant, and I went to my ultrasound, and it was at that time that the ultrasound showed a cardiac anomaly. At that point, my doctor referred me to a maternal fetal medicine hospital, which was about 2 hours away from us. I was scheduled to be induced. That way, I could give birth in a specialty hospital where there was the care that was needed when she came out, because obviously we didn’t know exactly what she had, but we did know that she had hypoplastic right heart. They were just concerned what kind of treatment she would need when she was born.

I got induced on July 27 of 2020, and then we got to meet Delila on July 28 of 2020. Immediately they took her to the NICU. Omar went with the doctors, and they started preparing everything. But surprisingly, she was stable. She didn’t need any oxygen. At that point, she looked healthy, seemed healthy. We were in the NICU for about 10 days or a week, and we thought we were going to go home.

Then the gastroenterologist came, and that’s when they found some blood in her stool. We couldn’t go home after that. They said, “We’re going to look into this further.” That’s what began their whole process of checking all the different tests and whatnot. That’s where they discovered she had the butterfly vertebrae, her bilirubin was high. They did the HIDA scan that showed that her bile ducts were very small. Her bile wasn’t draining properly. From there, they gave the presumed clinical diagnosis, but it wasn’t until … She came home after 34 days. They said, pretty much, “There’s not much more we can do for her here. We just want you to take her home and love her.” We did. But we didn’t get her actual genetic test results until about 3 months after she was born, and that had the confirmed diagnosis of Alagille syndrome.

Immediately after the doctors had told us that she had a presumed Alagille syndrome diagnosis, I immediately, investigator, went to the internet trying to gather information about what Alagille syndrome was, what we could expect, and what life would be like with a child with Alagille syndrome. I think I started probably on Google. I think I typed in Alagille syndrome and the Alagille syndrome Alliance is 1 of the first resources that popped up, so I was on there looking at the page.

Then also I wanted to see or talk to other families. I went to Facebook and I just typed in Alagille syndrome, and there were a few private Facebook groups that popped up. One of them is actually run by the Alagille Syndrome Alliance. I was able to get in there, and I probably posted right away, and I posted a picture of Delila and introduced our family. I started asking people, what has their experience been like? I gave some of her more specialty diagnosis, like ventricular septal defect and some other things that were more specific to her own diagnosis.

I had people chiming in saying, “Oh, my son or daughter has that.” It was just really nice to be able to have a community of people who understood what we were going through and whose own children and families had Alagille syndrome diagnosis. I definitely was just getting in there, posting, reading all the materials and support I could find on the ALGSA website and whatnot. That’s how I got involved.

Valarie Velasquez:

Here we have our oldest daughter, Alisa, right here in the middle. She’s 8 years old. If I could describe her, we would say she’s very, very creative. She loves crafting. She likes to draw, and she’s really good at making things. She’s also a problem solver, which we love because if she ever comes across a roadblock or a challenge, she finds a way to get through it. That’s her in a nutshell.

Then we have Lenora right here. Lenora is 5, she’s about to be 6 in a couple of weeks. One fun fact about Lenora is that her birthday is actually one day after Delila. Delila actually missed being born on Nora’s birthday by about an hour …

Omar Velasquez:

An hour and a half.

Valarie Velasquez:

A little bit over an hour. We were like, “Oh, no. Is she’s going to be born on Delila’s birthday?” Let’s pull out Delila’s picture. Then we have Delila. Delila, she was born in July of 2020, and she passed away at 15 months from Alagille syndrome. What do you guys remember about Delila?

Alisa Velasquez:

She liked to laugh a lot.

Valarie Velasquez:

She liked to laugh. What about you, Lenora?

Alisa Velasquez:

She likes snow cones.

Valarie Velasquez:

Snow cones. Yeah, she liked ice cream, snow cones. What about you, Lenora? What do you remember about her?

Lenora Velasquez:

That I knocked down her blocks and she would laugh.

Valarie Velasquez:

Oh, yeah. She used to build up blocks with Delila, and then she would knock them over, and Delila would literally just die laughing. It was so cute.

Lenora Velasquez:

Blockies, blockies, blockies.

Valarie Velasquez:

Yeah, she was really little. She never got over 16 pounds, but she was just so strong for being so little. She was so tiny, a little tiny warrior. Then she was very feisty. If there was something she didn’t like, she’d let us know right away. She loved ice cream.

Omar Velasquez:

And Rice Krispies.

Valarie Velasquez:

Yeah. That said a lot because she didn’t like to eat food. She didn’t like to eat purees very much, but she loved her ice cream. She would never say no to ice cream. Then she liked the Rice Krispies cereal because they were so little, and she would just pick them up with her little tiny finger and put it in her mouth.

They were just 2 and 4 years old when Delila was born. It was also during COVID times, so they weren’t able to be at the hospital at all for those 34 days that Delila was in the NICU. That really affected them because right away they wanted to see their baby sister, and they didn’t understand why they couldn’t go into the hospital. That was just really hard, having to explain to them Delila just needs extra help and care. She’ll be home as soon as she can.

We never had, obviously, a definitive date of when she would come home, so that was just really hard. Omar and I would go up to the hospital and just pack her bag and pack her stuff, maybe she’s coming home today, and be hopeful. But then they send us back home saying, “Nope, she’s not quite ready yet. We still need to keep her here.” That was just challenging, trying to explain to them all the time why we had to leave, why they couldn’t be there, why Delila couldn’t come home. That was definitely a way that we were affected, for sure.

Omar Velasquez:

It was. It was hard because the questions came every time we would go to Spokane, and go see her and come back. She wasn’t with us. Obviously the questions came and it’s hard answering, saying the same answer every time they would ask the same question. It got hard.

Valarie Velasquez:

Yeah. I think too, the time that we had to spend away from them, that was how they were affected by Alagille syndrome. We had to go take Delila to Stanford Children’s Hospital for her second opinion. Him and I just took her by ourselves, and we were going for 4 or 5 days, and so that was hard. We definitely had to rely on friends and our family members to help take care of the girls while we were gone.

Also, for them, it was just seeing everything that we had to do to care for Delila. There was constant medication that we had to give her. We had a regimen going. Then they saw her with her tubes, like her NG tube, her G tube, and they would witness Omar putting her NG tube in himself. It was hard because Delila would just scream while we’re putting it in. A lot of things they saw that were just not normal and probably very affected how they saw their baby sister with a rare disease, for sure.

Omar Velasquez:

I found it was. .. With Val, because was she was the other person that was going through what I was going through, but also some of my close friends from work. That’s who I would vent to when I needed to. I know they didn’t understand what I was going through, but at least I can … For me, it was venting.

Valarie Velasquez:

Definitely our family, who helped take care of the girls while we were traveling for appointments and whatnot, we definitely relied on them to watch the girls for us. I think too, I relied the Alagille syndrome community just, again, as a resource for me. I would ask questions. It was just comforting to know that there was other families out there who were going what we’re going through. If I ever posted on there, “Oh, Delila’s levels are this, is that normal?” People would be like, “Oh, yeah, that’s normal.” It was just really nice to have a sounding board.

Of course, the Alagille Syndrome Alliance, they support our family in many ways throughout Delila’s journey. We were very thankful to have that community who had educational materials and also support for us when we needed it. Just Omar, we really relied on each other. He was the person who knew what I was going through as well, and we were just a team. We had each other.

Having the Alagille syndrome groups on Facebook, and then also the Alagille Syndrome Alliance page was just really helpful for me. Again, I would post on there sometimes, sharing milestones or just even venting. Families were able to just chime in and pretty much acknowledge that what I was going through was normal and things do get better.

I remember when Delila was about to get her G-tube, and I was just so worried because in a sense, I almost felt like a failure. I feel like, as a parent, you feel like, “Oh, because we’re … I’m not doing enough. She’s not gaining weight, and so now we have to get a G-tube.” But I posted in there what my feelings were, and families were able to validate for me, “No, we understand what you’re going through.”

But having a G-tube was really helpful for our family. Don’t look at it as a failure. It’s really a good thing. It was just comforting to have people chime in like that because it really made me more comfortable moving forward and just knowing that these are things that other families have done, and their kids are doing great now. That’s very helpful.

Omar Velasquez:

Yeah, I can definitely tell the difference when she would post on social media. I would get home from work, her attitude, “Oh, I found more information about this. Some parents told me this.” I was like, “Okay. You got your answer.” I was, “Okay, we’re good now.” It was good to see her smile a little bit afterwards.

Valarie Velasquez:

Yeah, I’m definitely a warrior, so having a specialized group where people knew exactly what we were going through was just such a relief to me, and it was just so helpful. Having experts, like the Alagille Syndrome Alliance, they have medical experts that weigh in the community and stuff, and so it was just really nice to have that extra information.

I think the biggest unknown for both of us was just how long was Delila going to live. Because from her cardiologist, we knew that her heart was too complex for any kind of surgeries. Even though she did need a liver transplant, she would likely not make it through such an intense surgery because of her heart being so complex. I think, ultimately, the question we both had was given the fact that her liver disease is so bad, how long is she going to live without having a transplant? That question definitely took a toll, I think.

Initially, when doctors are telling us … Even when we got a second opinion from Stanford, a world renowned hospital, and they told us the same thing, “We’re not going to do any surgery on her because she probably won’t make it through such an intense surgery.” I think you almost felt a little bit hopeless at first. Because it’s like here doctors are saying there’s nothing they can do for her, so it’s just a hard pill to swallow. I think you could definitely get stuck in living in the negative and just being upset.

But I think that we had a little bit of mind shift or a little bit of change just knowing that there was a doctor, a cardiologist who mentioned he worked overseas when he was younger, and there’s kids who have medical diagnosis, but they don’t have the interventions that they do here in the U.S., but these kids live a really long time without any kind of interventions. I think we just were really hopeful that that would be Delila and that regardless of her being able to have a surgery, like a transplant, that she would still live a really long time. I feel like that provided some hope for us.

Omar Velasquez:

Yeah. For me, it was also not knowing how long I was going to have her. I think it was one of her cardio doctors right here in Tri-City that, well, obviously when he told us that when she was born, she wasn’t going to be able to breathe, she needed oxygen. She was born, I was sitting with her in the NICU, and I was like, they didn’t hook her up. One of the doctors just started saying, “No, she’s fine, she’s fine. She’s doing good. Her levels are good.” I was like, “Okay, well…” Hearing this from the one doctor that told us that he’d been to other countries, I was like, “Well, she did this. I’m pretty sure we can have her for … She can do it.” Maybe some hope that she can live a long time with us. Yeah.

Valarie Velasquez:

Yeah, it’s almost like proving the doctors. We already proved one doctor wrong, so there was hope and we’re proving more people wrong. But I also, as far as uncertainties in the future, I was just really hopeful that with the advances in medicine and technology, that maybe in her lifetime we would see a medication or a therapy that would help slow down her liver disease or something that would just keep it at bay. That way she didn’t need to have the transplant ultimately. I think I was just really hopeful for that.

But again, I feel like we had a lot of hope and we tried to find happiness with everything we did with her. We didn’t do a lot, again, because she was so medically fragile. But we did do our 1 family vacation. We took her to the Oregon coast. Almost a year after she was born, we went on a family vacation. We have that 1 memory with her on a vacation, so that means a lot to our family that we have that. We just took it day by day with her. There was good days, there was bad days, but we just cherished all the time we had with her.

Omar Velasquez:

We just made memories, good memories.

Valarie Velasquez:

I would just say don’t give up. I know it’s really easy to think of all the worst things and of course you Google things, and there’s a lot of information out there. Just don’t give up hope. Sometimes doctors too, doctors who are not specialized in Alagille syndrome, they don’t know everything that there is to know about the disease. Just because they might say one thing, take things with a grain of salt. Do your own research, get connected with doctors and specialty people who know about Alagille syndrome and then just keep having hope.

Omar Velasquez:

Hope, yeah.

Valarie Velasquez:

Yeah. I feel like that’s what really kept us going was 1 day there would be a cure for Alagille syndrome, or just 1 day there’d be something to help Delila. That’s really what kept us going. Then I think also, too, if you’re religious, just lean into your faith a lot. That’s really what helped get me through some of the really tough times, was just leaning into faith and relying on your support network. If you have friends or family, confiding in them and just leaning on them if they’re able to. If you have kids and just need a break, really just have your other kids go with the people you trust and just take some time for yourself to really take a breather or whatever you need to do, because life with a medically complex child is just really … it’s really tough. It takes a toll on you for sure. Being able to just take time and do the things you love is what I would say, recommend.

Omar Velasquez:

For me, I want to be a living donor. I’ve been working at it with one of my doctors, getting my health where I need to be so I can do that. I feel like I owe it to her that I need to do that to help somebody that needs it.

Valarie Velasquez:

For me, Delila has had a huge role in shaping my future because I really got inspired from all of the care that we received from palliative care programs and respite care programs while we were in the hospitals. I feel like I got exposed to public health field through her. I actually decided in 2021 that I was going to quit work, and I was going to pursue my Master’s in Public Health. I had planned to start my program, and I stopped working, and it was just me and Delila. We were at home together and I was like, you know what? At that point, we received the news that her liver disease had progressed from newborn to stage II or III in over a year. I was like, I’m going to just stay home and take care of her, and I’m going to start this Master’s in Public Health program.

Unfortunately, Delila passed away just 3 weeks after I stopped working and I was about to start my program. At that point, I really thought either I can just go back to work and do what I was doing, or I can still pursue this degree in memory, in honor of her. I chose to continue with my degree, and I actually just graduated about a month ago. She really inspired me to just keep going. Through her, I was able to do my Master’s project, my graduation project with the Alagille Syndrome Alliance, which was really, really cool. It was a great opportunity to just in a way give back to them because they helped us so much throughout Delila’s journey. I was really thankful at the opportunity to be able to help them and just be able to connect with the community even more.

I definitely had to take a little bit of a break from social media and whatnot, seeing everyone on the Alagille syndrome community after she passed, just because it was really hard to see all of this Alagille syndrome content and stuff related to Alagille syndrome when I was just trying to grieve with our loss of Delila. When I actually, I gave it a few months, and then after that, I started getting slowly integrated back in there. When I was ready, I was able to post stuff about Delila or just be interacting with some of the posts myself. I would just say definitely if you need to take a break from it, that’s totally fine, and get back into it if you want when you’re ready. I think it’s really important because our input is still very valuable.

I feel like that’s something that sometimes people … Bereaved parents may think like, “Oh, my child passed away and my input and my feedback is no longer valuable.” But I think the Alagille Syndrome Alliance really let me know that, “No, just because your child passed away doesn’t mean that your value is any less important, and it’s really valuable for other parents.” That inspired me to just to keep talking about Delila, even though she’s passed away now, just knowing that what experience we have is still important. It’s just something that’s really, really nice to share with others who may be needing it too, who may be just needing some hope or just someone to relate to.

Omar Velasquez:

I think advice I can give them, don’t stop doing things you love. Keep yourself busy. I know it’s hard to get your mind out of the gutter because all you’re thinking about is your loved one. But I can say that it gets easier as every day you feel like you can breathe as time goes on. The pain doesn’t go away, but it gets easier over time.

Valarie Velasquez:

I would say too, lean on your friends and family. We had a lot of support after Delila passed away. If people are willing to just be a shoulder to lean on or an ear to listen to, just take what you can. With our little ones, they were 2 and 4 and when Delila passed away, and so being able to have family members help watch them for us. Well, we just need a moment to breathe, just to take a moment for ourselves and just relax a little bit. It was very helpful and very nice. We were very appreciative for all the support we received.

Omar Velasquez:

For me it’s my girls. Those ones that keep me going, I look at them and that’s where I get all my motivation from. I just want to give them everything that I can.

Valarie Velasquez:

Yeah. We could have gotten stuck in a spot after Delila passed away where we were just … we could have gotten depressed or been just stuck, but we have our other 2 daughters that we had to get up every day for and keep living for. I think that was really how they helped us move forward as well. As far as education, for me, just knowing that I feel like I wanted to make Delila proud by pursuing my degree and not quitting and just to keep going. That for me, Delila has just been my strength. Obviously times have been very hard.

We go through ebbs and flows. Grief ebbs and flows, but Delila’s middle name is Luna, and in Spanish that means moon. Myself and the girls and Omar, our family, we definitely, we view the moon as that’s Delila. She just moved. She used to be in our arms, but now she’s in the sky. That really helped I think all of us really process her death. For me, I can just be having the worst day, but I just feel like my Luna pops up in the sky at the best times, at the most perfect times when I need her. I really feel like she helps us get through, even though she’s not here on Earth anymore.

Omar Velasquez:

I know that she was a warrior.

Valarie Velasquez:

Yeah, she was just, even though she was so little, she was just so brave. We would see her. She of course had multiple blood draws, and she got poked a lot. Even though it was painful to see her do that, we just knew that she was just so strong. She would stop crying right away. But she just had an inner strength that we just try to embody ourselves in our lives and how we live and just continue to make her proud. I think that is really is what keeps us going. But yeah, she was really brave. That’s one thing we just remember about her.

Rare Disease 360® is the Official Media Partner and Official Publication of The Alagille Syndrome Alliance (Alagille.org).