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I'm Aware That I'm Rare: the phaware® podcast

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Liza Bonpin - phaware® interview 240

Apr 23, 2019

Pulmonary hypertension pediatric caregiver, Liza Bonpin discusses her daughter Maddie's diagnosis, details her right side congenital diaphragmatic hernia, and how she lives life tethered to O2 24/7 since birth.

My name is Liza Bonpin. I'm a parent of Madeline. We also call her Maddie. Our connection with PH is Maddie was born with pulmonary hypertension. She's now 13 and doing quite well. We are from San Francisco. We have a great team at UCSF that's been taking care of Maddie since she was born.

She was diagnosed with a right side congenital diaphragmatic hernia right when she was born. It was a little shock to the system but, thankfully, we are in the Bay area, and we were transferred to UCSF the same day she was born, and they helped her out. She got surgery for the hernia at two weeks of age. Since then, she's been treated for the pulmonary hypertension.

So, [for] a right side hernia, she was treated with surgery and, because of the hernia, she had what you call a right side hypoplasia, which is a smaller right lung, which is basically not functioning. Currently she's functioning with her left lung and, because of that, she has the pulmonary hypertension. She is being followed by the CDH Clinic at UCSF, which are a team of surgeons and nurses, and they check the patch. It's been doing well. She's been growing well with it, so she's also being seen closely by the PH team.

Maddie's been on oxygen since she was born, so it's nothing different to her. When she was born, she was being treated with Nitric Oxide and, at the time, Flolan, when she was an infant. It was definitely challenging at first, but we did roll with the punches, and she has been quite the miracle. Ever since she was born, she's been a fighter and, until now, being a tween, she's still the fighter that she is.

It's been an adventure. We've traveled with her. We don't try to limit what she can do because of PH. She did preschool, even though preschool is a magnet for all kinds of things. She survived preschool. She thrived. One of her best friends is from preschool. She goes to school. Currently, she's being homeschooled. We're doing it proactively during the flu season as she's still pretty sensitive to the viruses that are out there.

Other than that, she's learned to swim. She's gone on a jet ski when she was five with her dad in the Philippines. She likes to do all sorts of stuff. I would call her fearless. As her mom, we just let her do what she wants to do and go with it.

When she was born, she was in the hospital pretty much for the first year of life. My dad, who was in the Philippines, and my cousin, they moved here when she was born to help out, and we also have a great extended family in the Bay area and in Los Angeles that came and helped out myself and my husband. It was quite challenging at first, but, because of all their help, we were able to get through it.

Then I got pregnant, twice after that, so now we also have a nine-year-old, Max, and a five-year-old, Magnace, who is great with Maddie sometimes. There's a little bit of sibling rivalry, but they work pretty well together. It definitely takes a village to raise a child, or three.

Going to pre-school, we weren't sure whether we should do it or not because her first year of life just, you know, the wind or the air would set her back, and she was really sensitive to going outside. It took a while. It took a little bit of convincing, for us to find a preschool and find the right fit, and preschool in San Francisco is pretty challenging as it is to find one. My husband and I decided, since I wasn't working, that we do a play-based preschool that was a co-op type, and so I was able to go with her three times a week she was at pre-school.

[I would] be with her, even though she did not want me there. She is one of those kids that, you know, was not afraid of being on her own. I was there, and she had her little oxygen tank, and there were slides, and I would navigate going up and down the slide, trying to keep up with her, running around the sandbox in the preschool, and I'm still good friends with all the moms, and they remember me running behind her, until I figured out taking off the oxygen would be better and safer for both of us.

Then in elementary school, it was partly luck and also timing. We found a great school that provided all the resources that she needed for her to thrive. She had a bit of significant developmental delays, so she had PT, physical therapy, occupational therapy, as well as speech. So, before preschool, we had set up an IEP for her so she would be able to get all the needs that she would need to have met for kindergarten.

Because of that, it made the transition a little easier, although it wasn't so smooth sailing all the time because, once we got to the school, they did have nurses, but she wasn't going to have a one-to-one nurse. That worried me, because if something happened and they had two patients they had to take care of, so, basically, we had to advocate, wrote a letter, had her doctors write a letter, and we got Nurse Balete, who we're still friends with. [She] was an amazing nurse to her from kindergarten to fourth grade. Now we have Nurse Margaret in high school who's also great and, even though Maddie wants to get rid of her, she loves her, and she's probably going to still have her when she gets to high school this fall.

One thing I found very important when she was younger, was support groups. PH didn't have support groups for kids, so I just dragged her along to the adult support groups with me. And maybe it didn't make much sense, and the issues were different, but I think helped me and, in turn, helped me take better care of Maddie. Now, there are some kids or teen support groups, but I leave it up to her to decide if she needs it or not. She has a great group of friends, so they are her support group.

For new parents out there, you know, having a newborn is hard enough, and having a newborn with a condition like pulmonary hypertension is definitely challenging, so I suggest talking to your friends, telling them about it, so they know how to best help you. That's how we did it. That's how we're still doing it.

I'm Liza Bonpin, and I'm aware that I'm rare.

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