Almost a decade ago, my friends went on a trip to Italy to visit the Vatican and they brought me back a rosary of Our Lady of Lourdes. As Catholics, we know her as the patroness of the sick and healing. So when I found out they were going, I asked them to think of me and pray for me because I wished for a baby. My husband and I had tried for kids throughout our marriage, but we decided to stop trying because of the toll it was taking on my mental health.
I said it was like a miracle because we had gone 15 years without having kids. After I found out I was pregnant, I put a lot of faith into that rosary. I would hold it and pray hard that my baby would be okay. You could say that as Catholics, we cling to a certain kind of belief and I held onto that. I told my husband that we were going to name our daughter after her, our Lady of Lourdes.
Now, my Lulu is seven years old. But a month and a half after she was born, we went to the pediatrician and the doctor said they needed to do labs on her because they noticed her abdomen was a little large. After the tests, we were told they’d call us back with the results. We then received a call and they told us that we needed to go to UCSF Oakland Children’s Hospital.
Once we got there, they took her blood, ultrasounds, x-rays. The doctors told me she had jaundice, and they explained that her yellow color meant her bilirubin levels were very high. They said it looked like there was a blockage in her liver, which was then diagnosed as biliary atresia, and they told us she needed surgery.
Unfortunately, the surgery didn’t help. They said they were going to keep her so she could recover and be strong enough to go through the transplant list, but they told us that the procedure would be done in San Francisco. It gave us hope, but at the same time, they started telling us that the worse she got, the more critical her condition became, the higher up she would move on the list. Meaning, if your daughter is dying, they’ll give her the transplant. I was already going through intense post-partum depression and after all of this, it became an even bigger crisis for me. Since they couldn’t put her so soon on the transplant list, she had to stay at Oakland Children’s Hospital for three months in the Neonatal Intensive Care Unit.
At six months old, she finally got a liver transplant. She had a total of six surgeries, and that meant her care would require various follow-ups with doctors and specialists. Now, we go to San Francisco every three months so she can get checked by the liver doctor through ultrasound. Sometimes my husband will drive us to these appointments but when he can’t, we take BART and use public transportation. Lulu also sees a hematologist there because her platelets are high, and a rheumatologist to rule out autoimmune diseases. So from an early age, she has always said that she felt different from the other kids.
We moved to Fremont 20 years ago and after living in Hayward and Union City, we came back to Fremont in 2022 because we could apply for and rent an apartment through affordable housing.
Ultimately, my husband and I decided it would be best to keep taking her all the way to Oakland for her pediatric check-ups, even though it’s a bit far. I could take her to local pediatricians, but because of everything she has, she needs one who’s also up to date on everything her other doctors are doing and has access to all the relevant information.
Since we only have one car, my husband takes it during the weekdays to work at a local cafe near Warm Springs BART station. I don’t drive, so I rely on BART and public transportation to take Lulu to her appointments in Oakland and San Francisco. How often she has them varies on a monthly basis, but her primary doctor is at UCSF Oakland Children’s Hospital.
If Lulu has an appointment at 11 a.m., we have to leave the house at around 9:30 a.m. to take a Lyft or Uber to the Fremont BART station. If we decide to take the bus, we have to leave around 9 a.m. instead. Usually, Lulu doesn’t like waiting for the bus so I opt to take her through rideshare services. Once we get to the station, I tap us in and we wait for the train.
During the 40-minute train ride to MacArthur BART station, Lulu has her tablet and plays games. She’ll often ask for a snack or two before going to the appointment, and point at things outside the window that she sees. Once we get to MacArthur BART station, we take the UCSF Children’s shuttle bus to the hospital or to her other appointments, like the dentist. The shuttle bus usually picks us up between five to 15 minutes. We could walk to the hospital to avoid waiting that extra time, but it’s hard for me to walk for an extended period of time because of a bad fall that hurt my knees two years ago.
Once we wrap up the appointment, we have to take the shuttle bus back to MacArthur BART station and then take the train to Warm Springs BART station, where my husband can pick us up. Lulu doesn’t like waiting for long, so we choose to get dropped off at this station instead because it’s easier for her dad to get to, and so we don’t have to take a rideshare service or more public transit.
My only options for getting around are walking, the bus, or BART. That’s the only way I can take my Lulu to her appointments without my husband having to miss work to help with our responsibilities. With the closure of the Warm Springs BART station, I’d have to change my route to get off at another station for my husband to pick us up, which would take longer. He only works five hours a day because there was a change in ownership at the cafe, and sales have gone down so much. Personally, I take time off my part-time job as a cashier to take Lulu to her appointments. I worry because I’m conscious of the fact that I’m not the only person who needs BART.
The easy thing would be to grab an Uber, but right now—especially during this period—what we’re mainly looking at is the cost of the trip. And then I start to take into account the traffic because once we’re on the ride, and she’s seeing the slow traffic, if the car isn’t moving, she starts saying that it’s taking too long, that her stomach hurts, that she feels dizzy. That’s why I stopped using it, because I’ll go on BART and at least Lulu is walking, seeing stuff outside, and she’s distracted, so that was how I figured out how to manage with her.
Her condition is stable, but she needs to continue treatment, and her treatment is a lifelong commitment. I can find doctors that can be her main pediatrician here, but I always say it’s a different situation. I think that all the doctors should be communicating with each other in order to provide better care for her. In fact, any medication they want to start with Lulu has to be approved first by the liver specialist. So these are different things that we have to go through. I know it’s a little more time, work, and effort to go all the way to Oakland and San Francisco but it’s Lulu’s health. We aren’t going to take any risks.
“Mi Historia” is a first-person narrative series that amplifies community voices.
