Seamless primary and specialty care: Lea’s story

For parents of children who need specialty care on top of their typical visits with pediatricians, CHOC’s growing Primary Care Network offers seamless integration with more than 30 specialty areas represented by CHOC’s mighty brigade of pediatric specialists.

Lea, age 4, has seen a CHOC specialist since before she was born. Lea was diagnosed in utero with hydronephrosis – a treatable condition in which urine gets trapped in the kidney and drains slower than it should into the bladder. A routine ultrasound flagged fluid in Lea’s kidney, and her mom was referred to CHOC’s urology program for a fetal consultation.

Dee Dee, Lea’s mom and a longtime CHOC employee, knew her daughter was in good hands.

“The urologist explained everything in a way that was easy to understand,” Dee Dee recalls. “I was comforted knowing that this condition was common, my daughter would be OK, and that they would continue to monitor her and manage the condition after she was born.”

Dee Dee chose to deliver at St. Joseph Hospital in Orange for its proximity to CHOC. Doctors weren’t concerned that Lea’s hydronephrosis would cause her any immediate harm, but it gave the first-time mom peace of mind knowing that CHOC was right across the street.

Specialty care with CHOC’s urology program

Lea returned to CHOC’s urology program after she was born for additional testing and monitoring.

baby ultrasound
When she was 1 month old, Lea returned to CHOC for an ultrasound.

Urologists confirmed the prenatal diagnosis and also diagnosed Lea with vesicoureteral reflux or VUR, where urine flows backward. Lea’s VUR is due to wide ureters – tubes located between the bladder and kidney, and essential to proper urine flow – and valves that are too small to efficiently direct urine flow.

Some children with VUR grow out of it without the need for medical intervention. This is less common in children with higher grade openings between the kidney and bladder, as is Lea’s case. Doctors explained to Dee Dee and her husband Pat that over time, VUR can lead to infections in the kidneys. Eventually, a high number of these possible infections can lead to kidney damage.

After receiving Lea’s diagnoses, Dee Dee and Pat switched their daughter’s pediatrician to one in CHOC’s Primary Care Network.

“We realized that if we were going to need specialty care for our daughter, we wanted a pediatrician in the CHOC network to fit into that puzzle,” Dee Dee says. “CHOC is the best partner in caring for our child.”

MRI prep
At age 1, Lea underwent an MRI in preparation for her Deflux injection. Before her MRI, she played with her dad.

Lea has remained under the care of CHOC urologists, who continue to monitor her VUR. This has included two voiding cystourethrograms (VCUG). With this test, doctors insert a catheter and dye to fill Lea’s bladder, then take X-rays of fluid flowing in real time. Tests of any kind can be stressful for young kids, so child life specialists from CHOC’s Cherese Mari Laulhere Child Life Department have been present for each of these tests with Lea. Child life specialists are experts in normalizing the hospital environment for kids, but by being an extra source of comfort, they often put parents at ease, too.

“Child life has been amazing with Lea,” Dee Dee recalls. “During one VCUG, the child life specialist asked about Lea’s favorite song. At the time, it was “Wheels on the Bus” so that’s what she sang with Lea. I joined in the song, and before I knew it, every single clinician in the room was signing along to “Wheels on the Bus.” I remember thinking that even though the radiologist was so smart and so focused on performing the test, he was not above singing this song. He knew that is what my daughter needed in that moment to feel comfortable.”

Shortly after Lea’s first birthday, she underwent a procedure called a Deflux injection, where, under anesthesia, doctors injected a protein or ureter material to make the wall of Lea’s ureters thicker, hoping to close the gap and ensure proper urine flow, helping to continue avoiding UTIs.

Lea’s care team – including her parents – remain on high alert for a urinary tract infection or UTI, as a high number of these can contribute to kidney damage. Lea took preventive antibiotics until she was potty trained to help avoid UTIs.

age 3 ultrasound
Lea and her mom Dee Dee take a selfie during a recent visit to CHOC for an ultrasound

Lea sees her urologist Dr. Heidi Stephany a couple times per year, and they’re able to seamlessly communicate with Lea’s CHOC pediatrician, Dr. Katherine Williamson.

Primary care network

As part of CHOC’s growing health system, pediatricians in CHOC’s Primary Care Network not only have full access to any medical records from their patients’ specialty care visits, they can also see notes from recent visits to other providers, meaning they have the latest information on their patients’ medical history.

This coordination was especially beneficial for Lea and her parents on a recent weekend when Lea had a suspected UTI. Although common in children, with Lea’s VUR, potential UTIs are cause for concern.

Thanks to Saturday morning hours at Lea’s pediatrician’s office, they were able to get a last-minute appointment.

“With Lea’s condition being relatively rare, I’m used to explaining it to people,” Dee Dee says. “But when we saw Dr. Ball, he already knew her medical history and was very familiar with her condition. We typically see Dr. Williamson in that office, and she is well-versed in Lea’s health, but seeing Dr. Ball was seamless. It was such a relief not to have to explain anything to a new-to-us provider.”

A urine sample is a routine and necessary part of testing for UTI. These can be hard for children and parents alike, but Dee Dee felt grateful that Dr. Ball and his staff were patient with Lea.

“The whole staff was really patient with us, even though we were the last appointment of the day. They just kept coming in and checking on us to see how we were doing,” Dee Dee says. “The office also felt very safe during COVID-19; everyone was masked, and everything was clean.”

Ultimately, Dee Dee and Lea headed home with instructions to drink more fluids to help Lea produce a urine sample, and a plan to head to CHOC’s urgent care in Orange when Lea was ready. During this time, Dee Dee called CHOC’s urology team to confirm their course of action.

“I called the urologist on call, and even though it wasn’t Dr. Stephany, who we typically see and who is most familiar with Lea, the doctor who called us back had already looked at Lea’s chart and read Dr. Ball’s notes from that morning,” Dee Dee says. “He reassured us we were doing the right thing and validated my choice to bring her to CHOC’s urgent care.”

Lea continued drinking fluids to help produce a urine sample. When Dee Dee and Lea got to CHOC’s urgent care, they saw Dr. Vivi Tran, a CHOC pediatrician. Dr. Tran likewise could see Lea’s complete medical history and Dr. Ball’s notes from that morning, as well.

“I didn’t need to explain a thing,” Dee Dee recalls. “Dr. Tran was already up to speed, and that was such a weight off my shoulders.”

CHOC pediatricians know kids, and they know that rushing a child – especially to do something like produce a urine sample – will often have the opposite effect. Dr. Tran checked in with Dee Dee and Lea periodically, and even brought Lea an apple juice to help her produce a urine sample.

“CHOC made this as stress-free as possible for Lea and me. We were there for three hours trying to get Lea to produce a urine sample, and never once did I feel rushed,” Dee Dee recalls.

Lea’s UTI test was ultimately negative, and she had a regularly scheduled appointment with her urologist the next week.

birthday party
Lea recently celebrated her 4th birthday.

“The seamless coordination of care between Lea’s pediatrician’s office, her specialist and urgent care was unmatched. We could never find that anywhere else. I didn’t have to bring anyone up to speed on what was happening or my daughter’s medical history. They had access to her records and the latest information on her case,” Dee Dee says of her daughter’s experience. “I also know our positive experience wasn’t just because I’m a CHOC employee; everyone receives a high level of care.”

Mom’s perspective

Since joining CHOC’s marketing department in 2013, Dee Dee has had a firsthand look at CHOC’s patient- and family-centered care and has worked closely with a number of CHOC specialists. This recent experience with her daughter gave her a greater understanding of and appreciation for CHOC’s system of care.

“We write about various conditions every day and provide education on CHOC’s coordinated system of care. I already knew these things were true because of my job, but then I experienced it myself as a mom and I truly understood how beneficial these things are,” Dee Dee says. “It seems like the scariest thing in the world, to have a child who needs CHOC’s care, but it’s actually the most comforting thing.”

Learn more about CHOC’s Primary Care Network

Related posts:

Advice from one NICU mom to another

By Amy Rogeness, mom to Cora and Ellie, graduates of CHOC’s Small Baby Unit

Having your child in the neonatal intensive care unit (NICU) or Small Baby Unit (SBU) is something that no one will ever truly understand until they experience it for themselves. It is hard to truly convey the emotional rollercoaster that exists when you have a child in the NICU. Whether your time in the NICU is expected or unexpected, a NICU stay is nothing that a parent wants to go through when welcoming their child (or children) into the world.

My twin daughters, Cora and Ellie, were born at 24 weeks and 3 days and immediately admitted to CHOC’s SBU, a special part of CHOC’s NICU designed for the smallest and sickest babies. Cora and Ellie stayed in the NICU for 136 days until they were finally ready to go home. You can read more about our family’s journey here.

Twins graduate small baby unit
Cora and Ellie

Before my twins were in CHOC’s SBU, if someone had asked me how I would cope with having a child in the NICU, I would have told them I wouldn’t be able to do it. Although my father is a neonatologist and I knew of the NICU and potential challenges parents can face, I honestly never imagined that I would have to go through something like that. I’m not sure that any parent really expects to be in that type of situation. I couldn’t have imagined a two-week stay in the NICU with one child, let alone a four-month stay with two.

Even looking back, it doesn’t feel real. Did we really do that? Did we really get through it? How did we find the strength to get through it? The answer is that we did it because we needed to – we had to – for our girls. Sometimes you discover a strength you never thought you had when the unthinkable happens.

My first piece of advice to other NICU parents is this: Be patient with yourself. Let yourself grieve for what you thought your child’s birth would be; this most likely isn’t how you imagined the beginning of their life to be.

Participate in your child’s care

Being at the hospital and being involved in your child’s care is not easy. While your involvement in their care is a key part of their treatment and helps establish connection between parent and child, it can be extremely anxiety-producing. Doing skin to skin when the babies aren’t stable can be terrifying. But, know that you are doing exactly what you need to do for them. This is something you have control over and something that will dramatically help their outcomes. It can feel overwhelming and scary, but this is your chance to care for them when you might otherwise feel powerless.

NICU parent holding twins
Amy holds Cora and Ellie in CHOC’s Small Baby Unit.

Remember that your baby — or babies — know you; they recognize your voice and they know your touch. Even though they are receiving extremely good care, no touch means more than yours. You are an essential piece of their care team.

One of the most amazing things my husband and I did was to start participating in the girls’ baths. When they were unstable, the girls would get a “bath” that included a small wipe down of their body. As they became more stable, they were able to get a bath in their bed. This included water and soap but did not happen in an actual tub yet. When the girls had their baths in bed, the nurses and respiratory therapists would work together to take off the girls’ breathing equipment to give their little faces a small break. The respiratory therapists would use an oxygen mask to ensure they had the proper breathing support during their bath. Thanks to this, we could actually see their faces and get closer to them for a longer period of time. Giving your child a bath is one of those things that feels so normal and something that all parents do.  As we bathed each girl, it almost felt like we were finally able to really see them for the first time as our children – see their features, their eyes, their expressions. It also felt like they could really see us for the first time, too. The connection we felt with Cora and Ellie during that first bath was amazing. I remember leaving the NICU the night of their first bath feeling lighter than air. I think it’s something that all parents in the NICU, especially the SBU, should experience.

A physical battle for the child, an emotional battle for the parents

A friend told me that during the NICU stay, your children have a physical battle and parents have an emotional battle. That was one of the most accurate things one NICU mom could say to another. As parents, you are in an emotional battle and it’s a hard one. Even when your baby becomes stronger and moves out of the critical stage, you enter another emotional phase of wanting and waiting to take them home.

In order to be there for them as much as you can, you need to take care of yourself. During our NICU journey, my husband and I made sure to prioritize going to therapy to work through the rollercoaster of emotions and the trauma of having extremely premature babies. Ensuring consistent therapy was extremely important and helpful in allowing us to be strong for the girls. As you go through the NICU, you will take care of yourself physically, but make sure to care for your mental health too; your mental health is just as important as your physical health. If you are struggling mentally, it will be hard to physically show up for your child. Your child is getting the best care possible at CHOC, and you need to take care of yourself, too.

Cora and Ellie after the NICU
A family photo on Thanksgiving, after the girls were discharged from CHOCs SBU

The NICU journey is unbelievably hard, but you are much stronger than you think. You will get through it, day by day, hour by hour, or sometimes even minute by minute. You might not think you can get through it, but you can, and you will. You will find a strength you didn’t know you had because you know that your child needs you. It might not feel like it when you are in your darkest moments, but I promise that you will look back and be astounded at what you did and what you endured for your child.

Our daughters’ NICU stay was the hardest thing we have ever had to do, and one of the hardest things we will ever have to do – but we did it, and you can too.

Learn more about CHOC's small baby unit

Related posts:

My experience as a NICU parent during the COVID-19 pandemic

By Amy Rogeness, mom to Cora and Ellie

My daughters, Cora and Ellie, were born in May 2020 at just 24 weeks and 3 days gestation. They spent several months in CHOC’s Small Baby Unit, a special unit within the neonatal intensive care unit (NICU) that cares for the smallest and sickest babies. You can read more about our SBU journey – and see how well the girls are doing now – here.

Having a child – or in my case, two children – in the NICU is hard, and something that’s difficult to explain to someone who hasn’t experienced it. Becoming first-time parents is hard; becoming parents to twins is hard; having your children in the NICU for 136 days is hard; doing all of that during a global pandemic is that much harder and came with added complexities.

NICU parent holding twins
Amy holds Cora and Ellie in CHOC’s Small Baby Unit.

Feeling safe during a pandemic

Despite the pandemic, we felt safe at CHOC. Our daughters were in the SBU, located on CHOC’s Orange campus, and we visited them every single day. Due to COVID-19, my husband and I were screened every morning before we could check in at the front desk to get a visitor’s badge.

Soon enough after going every day, the screening and front desk teams began to recognize us and would ask how our girls were doing. These small gestures of recognition and concern for our daughters made us feel so welcome and somehow managed to put a smile on our faces, even during the hardest times. The screeners and front desk representatives were invested in the girls’ fight and when we were discharged, they were so excited to hear that we were going home!

Our heroes

The entire team who cared for our daughters are our heroes. Every day the doctors, nurses, respiratory therapists and developmental therapists came to work despite the pandemic. Even during a major health crisis that affected them professionally and personally, they cared so deeply for our girls. Although a scary situation outside of the hospital, when we were in the hospital, it felt like a small oasis away from the uncertainty of the pandemic because the CHOC care team gave the same level of care and concern to our girls that they would have provided during non-pandemic circumstances. Our girls wouldn’t be here without the work of a great medical team at CHOC.

Video: Amy and Brian holding Cora and Ellie in CHOC’s Small Baby Unit

The care team supported Mom and Dad, too

Being in the NICU during a pandemic dramatically changed our experience due to the safety protocols in place to protect the patients and employees. Normally CHOC’s NICU and SBU offers opportunities for parents to meet one another and get together for emotional support. Under normal circumstances, other visitors are allowed, which can help parents emotionally. My husband and I were lucky to have the ability to visit the girls at the same time, due to having twins, but our friends and family were not allowed to visit the girls. We completely understood the importance of a limited visitor policy to reduce the number of people in CHOC buildings during the pandemic, but that meant we relied that much more on the healthcare team for emotional support. The nurses and therapists became our friends and allies during our girls’ fight in the NICU. They celebrated with us, they were our shoulders to cry on, and they were the ones encouraging us to keep going. Not only did they provide excellent care to the girls, but they provided emotional care to my husband and I as parents – even during a pandemic, when they were also experiencing uncertainty in their own lives. This professionalism and personalized care made our experience bearable, daresay even enjoyable at times, because we could connect with them and laugh with them – important interpersonal connections that made us feel like we would get through to the other side.

Thanks to CHOC’s doctors, nurses and therapists, my daughters are doing well, and our family made it through this experience, and I’d like to express my appreciation for all they did for us, especially during a pandemic.

Seeing CHOC from a new perspective

I am in absolute awe of CHOC and its employees. I have always loved and admired CHOC; I grew up connected to CHOC and knew of the amazing work being done throughout the health system. But I was connected through being a doctor’s daughter and a member of the Orange County community; now I am a CHOC parent.

For the first time, I experienced the world-class care CHOC is known for, and the concern and dedication that everyone at CHOC shows to patients and their families. I cannot emphasize enough the highest level of concern for the patient, and the family-centered care delivered at CHOC.

I know that our story is just one example among thousands of others – stories of how much CHOC has done for patients and their families, not only to help heal a patient’s body, but also help them heal emotionally, as well.

Thank you, CHOC, for taking such good care of my daughters – and my husband and me – during our NICU experience throughout the pandemic.

Learn more about CHOC's NICU

Related posts:

Families giving back: Spotlight on BraveOnes Foundation

Rose & Jeff Kunze and Kendra & David Rosales have been longtime friends. They have seen each other through thick and thin, but never imagined having to support one another through the loss of a child.

Rose and Jeff’s son Hendrix  was admitted to CHOC’s neonatal intensive care unit (NICU) when he was born, due to genetic challenges.

BraveOnes family photo
Hendrix and his parents

Though Hendrix faced many health obstacles, it was clear that he was a fighter from the beginning. However, after a brave battle, Hendrix passed away from organ failure due to infantile spasms shortly after his first birthday. After he passed away, test results showed he had a very rare genetic disorder called OTUD5.

Creating a legacy

 What do you do when your best friend loses their child? This was a question Kendra kept asking herself. Both families were searching for a way to honor Hendrix. “You can either choose to be angry, upset and frustrated or you can choose to be grateful,” Kendra recalls. So, spurred by the love and gratitude they felt for Hendrix, the couples banded together to create the BraveOnes Foundation.

BraveOnes team photo
A BraveOnes Foundation team photo, taken before the COVID-19 pandemic.

The group has made it their mission to create childhood joy. The Kunze and Rosales families reflected on what brought hope during their darkest days while Hendrix was undergoing treatment and decided to bring some of that hope and joy to other children and families going through similar experiences. They have focused on two initiatives — funding a new neurology playroom at CHOC Hospital in Orange and providing meaningful meals to families.

 Providing childhood joy even during treatment

 During Hendrix’s short life, CHOC’s Neuroscience Institute — including to the first children’s hospital in California to be named a Level 4 epilepsy center — became his home away from home.

Because of Hendrix’s seizures, he underwent a lot of testing, which limited his ability to leave his hospital bed or room. Telling a growing child they have to stay in bed for extended periods of time can be challenging for clinicians and parents alike, and, can take a toll on families. The Kunze family had longed for a change of scenery for Hendrix, even if it was simply in another room where it would be safe for him to play.

Because of this experience, the BraveOnes Foundation’s first initiative was to fund a new neurology playroom. Through their extensive community and tribe of supporters, they quickly reached their fundraising goal of $120,000 for the specialty playroom. These funds will allow CHOC to expand the current playroom on the neuroscience unit, install wireless electroencephalogram (EEG) monitoring capabilities, offer enhanced sensory play with a tactile wall, install padded floors for added comfort for patients experiencing seizures, and purchase neuro-friendly toys for children of all ages.

“Imagine instead of needing to stay in your room for EEG monitoring, having a portable monitoring unit —you’re plugged into a backpack that allows you to move and continue your testing while also being in a room that has swings and sensory floors,” Kendra says.

Their vision for the playroom — planned in collaboration with CHOC experts — was to provide a space where children are not confined to their beds but can play and regain some of their childhood.

 Hope on a plate

Keenly aware of the struggle families face when they have a child in the hospital, and the sense of normalcy a catered meal can provide, the Meaningful Meals Program within the BraveOnes Foundation was created to provide dinners to families in CHOC’s neuroscience unit on a monthly basis.

Rose recalls a particularly difficult day when Jeff was at CHOC with Hendrix and the sense of relief he felt by receiving a free bagel. “He said, ‘I got a bagel and coffee and I feel like I can conquer the world,’” Rose recalls. “It was as if they had given him hope on a plate.”

Meaningful Meals quickly became a reprieve for families and relieved them of having to leave the hospital floor to get food so they could focus on supporting and making memories with their children. To date, BraveOnes has provided 1,500 meaningful meals to families at CHOC.

Creating joy during a global pandemic

Throughout the COVID-19 pandemic, BraveOnes started providing morale-boosting meals to hundreds of CHOC’s front-line caregivers.

The remodel of the neurology playroom is currently on hold due to the pandemic, but the BraveOnes Foundation still wanted to bring joy and light to children and families at CHOC. Through a generous donation during the holiday season, the group purchased enough Xbox gaming consoles for each patient room on CHOC Hospital’s fifth floor.

Hendrix’s legacy lives on as the BraveOnes Foundation continues to spread childhood joy.

Of her son’s legacy, Rose says, “I don’t ever think of Hendrix as a tragedy, but rather turning the unfortunate things he went through into joy. He showed us that there can be joy after heartbreak.”

Start your own CHOC fundraiser

Related posts:

Two generations of CHOC heart families

Liam, age 20 months and Anaya, age five months, are cousins who both happen to be CHOC heart patients. Liam was diagnosed with a heart defect in utero and needed heart surgery when he was a few months old. Shortly after Liam’s surgery, his younger cousin Anaya was also diagnosed with a heart defect before she was born – so far, she has not needed surgery but continues to be closely monitored by CHOC experts.

Liam and Anaya
Liam and Anaya

Learning that your child has a heart condition and might need surgery can be scary and stressful for any parent or caregiver. However, both Liam’s mom and Anaya’s mom – sisters Jasmine and Jennifer – were already familiar with CHOC’s Heart Institute, having been patients themselves.

sisters Jasmine and Jennifer
Jasmine and Jennifer

Jasmine, the older sister and Liam’s mom, was diagnosed with a ventricular septal defect (VSD) when she was a baby. She wasn’t eating, was losing weight and was crying more than normal – and eventually, she was referred to CHOC, where her VSD was diagnosed. A VSD is a birth defect where there is a hole in the wall that separates the two lower pumping chambers of the heart. Doctors at CHOC monitored Jasmine’s VSD for a while to see if it would close on its own, but eventually it was clear that Jasmine needed heart surgery, which she had at CHOC at age 4.

Jasmine at age 4, after undergoing heart surgery at CHOC.

When Jennifer, the younger sister and Anaya’s mom, was born, she exhibited the same symptoms that Jasmine had shown. Doctors at CHOC diagnosed Jennifer with an atrioventricular septal defect – where there is a hole both between the heart’s  upper chambers and the lower chambers with a single valve inside, instead of having two. She had two heart surgeries, the first at a few months old and the second at age four.

Both sisters had periodic checkups with CHOC cardiologists after surgery, and their appointments became less frequent as they grew older and stayed healthy. Jennifer still sees Dr. Michael Recto, who carefully follows adult and pediatric patients with congenital heart disease.

“Cardiac surgery for patients with severe congenital heart disease is not a cure. Lifelong follow-up is required with a congenital heart disease specialist,” explains Ryan Hansen, director of CHOC’s Heart Institute.

CHOC heart patient family
Jasmine, Jennifer, Liam and Anaya

When Jasmine and Jennifer grew up and thought about starting their own families, having heart conditions and a history of heart surgery posed special considerations. To be safe, each mother’s cardiologist asked to see her more frequently during pregnancy for additional monitoring given the known increased risks of heart complications, pre-term delivery, cesarean section and bleeding after delivery.

Jasmine and Liam

When Jasmine was 20 weeks pregnant with Liam, a routine anatomy scan showed that the baby had a heart condition. Jasmine was referred to Dr. Nita Doshi, a pediatric cardiologist at CHOC who specializes in fetal cardiology. A definitive diagnosis wouldn’t be possible until Liam was born, but throughout the pregnancy Dr. Doshi performed fetal echocardiograms, an ultrasound test to evaluate Liam’s heart.

“I was scared to learn that my baby might need heart surgery,” Jasmine says. “We weren’t sure if Liam would need emergency surgery when he was born, but Dr. Doshi talked to my OB/GYN and helped me make a plan.”

At the delivery hospital, a neonatal intensive care unit (NICU) team was in place for Liam’s delivery in case he needed urgent care. He was healthy, but he stayed in the NICU for 11 days for extra monitoring.

Once Liam went home, he began seeing Dr. Doshi for check-ups on his heart.

A Dr. Doshi patient
Liam in a onesie his mom had specially made to honor his cardiologist Dr. Doshi.

“Having a baby with a heart defect is scary, but once I saw Dr. Doshi, I felt calm,” Jasmine says. “Dr. Doshi explains complicated things in a way that make sense, even if you don’t have a medical background. She even draws hearts and diagrams. I just knew that at the end, no matter what happened, it would be OK.”

Over the next few months, it was clear that the hole in Liam’s heart wasn’t closing on its own. As Liam approached seven months old, Dr. Doshi told Jasmine it was time to talk about surgery.

“Finding out my baby needed heart surgery brought me back to my own experience,” Jasmine said. “I was old enough when I had surgery to have memories, and I didn’t want my baby to experience that or be scared. But I knew that if he had surgery as a baby, not only was it in the best interest of his health, but he wouldn’t be old enough to remember being hospitalized. I also knew that technology had progressed a lot since my own surgery, so I knew my son would be in good hands at CHOC.”

Liam underwent surgery with Dr. Richard Gates, a CHOC pediatric cardiothoracic surgeon and co-director of CHOC’s Heart Institute. After a successful surgery to close the hole in his heart, Liam spent three days in the hospital to recover. The first time Jasmine saw her son in the cardiovascular intensive care unit (CVICU) after surgery was emotional.

“It’s hard to see your child connected to all these tubes and machines,” Jasmine recalls. “But I’m grateful that a CVICU nurse pulled me aside before I went in Liam’s room and told me what to expect so I could prepare myself. It could have been a shocking image, but she prepared me for it.”

Jasmine also felt grateful for the education she received from Dr. Gates.

“Talking to Dr. Gates before and after the surgery made me more comfortable,” Jasmine recalls. “Dr. Gates explained everything in a way that was easy to understand.”

heart patient after surgery
Jasmine and Liam at CHOC after his heart surgery

Despite a network of support, and knowing her child was in good hands, the process was hard on Jasmine as a mother.

“I didn’t think I had the strength to have my child go through open heart surgery,” Jasmine says. “But Liam made me a tough mom. He made me stronger.”

Despite undergoing open heart surgery at seven months, Liam never regressed on his milestones. He loves to climb, is very independent and is a social butterfly.

anniversary of heart surgery
Liam celebrates the anniversary of his heart surgery.

“Liam is so active. If you didn’t know he had open heart surgery, or happened to see the scar on his chest, you would have no idea what he had been through,” Jasmine says.

Jennifer and Anaya

For Jennifer, knowing she had an older sister who had gone through surgery made the experience easier for her. Jennifer had surgery at age 4 to repair her AVSD and spent a week in the hospital recovering. At the time, their dad was working full time and their mom was taking care of three kids, so Jennifer spent quality time with her CHOC nurses while she was recovering.

“My nurses took good care of me. They gave me wagon rides around the unit, and I felt popular because everyone waved at me,” Jennifer recalls.

When Jennifer grew up and was ready to start her own family, she had more frequent check-ups during pregnancy given her heart condition. A routine anatomy scan of her baby raised concern for a VSD.

pregnancy photo
Jennifer poses while pregnant with Anaya.

“In the back of my mind, I knew it was a possibility that my daughter would have a heart condition like other people in our family, but I thought, ‘Oh, there’s no way. The chances are so small,’” Jennifer recalls. “At first, hearing my daughter might have VSD, I felt like I was floating; the news didn’t sink in. Then I was in denial.”

Jennifer and Anaya after birth
Jennifer and Anaya in the hospital after Anaya was born.

Jennifer was referred to Dr. Doshi – a familiar face, since Dr. Doshi had been Jennifer’s own cardiologist when she was a little girl.

“It is one of the greatest honors of my career to care for Jasmine, Jennifer, Liam and Anaya,” Dr. Doshi says. “As a physician, our truest joy of practice stems from the opportunity to become a part of their family through the care we provide.”

Anaya heart testing at CHOC
Anaya undergoes testing at CHOC.

Ongoing fetal echocardiograms throughout Jennifer’s pregnancy showed the VSD in Anaya’s heart was closing on its own. When Anaya was born, she spent one day in the NICU for monitoring. Anaya has had ongoing check-ups with Dr. Doshi to monitor her atrial septal defect, a hole between the upper chambers of the heart. Doctors also monitor her bicuspid aortic valve, meaning her aortic valve only has two cusps instead of three. There is a chance that Anaya will need surgery in the future, but also a chance that the hole will become smaller over time.

Anaya
Anaya

Advice to other moms

As their little ones grow up, Jasmine and Jennifer are eager to not only watch them develop, but to impart lessons they’ve learned through their own experiences as heart patients.

Liam and Anaya
Liam and Anaya

“I never saw myself as not being able to do this or that because of my heart condition; I always saw myself as normal,” Jasmine says. “I want that for Liam, and I know my sister wants that for my niece.”

The sisters offer these additional reminders to other parents of babies with heart defects:

  • Get informed and ask questions – as many as you need – until you feel comfortable.
  • It’s scary to know your baby will need surgery but remember it will be beneficial for them in the long run.
  • Having a baby go through surgery is often a harder experience on you as a parent, than it is on your child.
  • It’s very likely that your child’s heart condition will not limit their interests and activities as they grow up. (Jasmine and Jennifer both played competitive sports growing up.)
Learn more about the Heart Institute at CHOC Children's

Related posts: