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Illness & Loss

A Mother Opens Up About Her Daughter’s Congenital Heart Defect

Written by Katie Hintz-Zambrano

Photography by Photographed by Sabrina Bot

Although it’s the last day of February—a.k.a. American Heart Month—we couldn’t help but bring you this touching story about a family of a baby with a congenital heart defect, which is the most common birth defect of all. Paulina Nassar and her husband Nick Samo look like they have it all from the outside—two successful, creative businesses (Press and West Coast Craft), a beautiful 5-year-old son, Augie, and 9-month-old daughter, Prudence. Little would anyone know the tribulation they’ve been through since being told that Pru has a condition called Tetralogy of Fallot. Here, they share their journey.

Tell us about your pregnancy with Pru.
“It was a pretty typical pregnancy, very similar to when I was pregnant with my son. Nothing really out of the ordinary other than knowing for sure it would be a c-section. Augie had to be a c-section because his shoulders were bigger than his head and he was measuring at more than 9.5 lbs (he ended up weighing 10.5!). My doctor knew Pru would be big, as well, so a c-section had been scheduled all along. I actually went into labor the morning of the scheduled c-section, went to the hospital, and had to have an emergency section as my placenta partially abrupted while there. It was pretty scary, as things just started moving very quickly! But Pru was born beautiful and pink at 9.1 lbs.”

Describe the first moment you found out that there was something wrong with Pru’s heart.
“We didn’t find out until she was three days old. Pru was born ‘pink’ (heart babies are often born ‘blue,’ which is a tell-tale sign) and all her stats were perfect. Pru had a bit of jaundice, so she had been under the jaundice treatment lights when an NP doing rounds did a routine check on her. The NP came into our room and said they heard a murmur when they listened to her heart. Nick was in the bathroom and I just remember yelling for him to come out. She (the NP) explained that they would have to do an echocardiogram to find out exactly what was going on. I started feeling sick to my stomach. And fear. A fear so deep and dark it’s still hard to put words to it today. I remember telling the NP through tears that it felt like hell and it tore me apart when she said she understood. I also remember thinking about Augie. I didn’t want this to be his story. I didn’t want him to lose his sister. How could I possibly explain all this to him? He was so excited to have a sister; he would talk to my belly when I was still pregnant and tell her all sorts of silly and wonderful things. His life had seemed so blessed up to this point, it felt like all that was being taken from him.”

If you could go back and tell yourself something in that moment, what would it be?
“I have taken a photo of Pru every day of her life, but that one. I was so scared, so worried that I would lose her, so devastated. I think part of me was terrified to document this precious baby girl that I couldn’t bear to lose. Now I would tell myself to take a hundred pictures of her on that day, May 18th, 2015.”

What were the immediate next steps you guys took?
“She had her echo very quickly thereafter. It was very long and she was so good throughout. Her dad held her for it as I could barely stand. Not only was I sick with worry, but I had also just had a c-section. Once they were done, the pediatric cardiologist on duty (Dr. Ellen Chan) came to our room to explain what was happening. She told us Pru had a congenital heart defect called Tetralogy of Fallot. It is the most common of the cyanotic heart defects and occurs in about 2 out of every 10,000 births. (CHDs occur in 1 out of every 100 births and are the most common type of birth defects. 40,000 kids are born with a CHD every year in the U.S.) It is a combination of four defects, but the two that matter (the other two are effects of these two and aren’t really what causes issues) are a hole between the lower chambers of the heart (a ventricular septal defect) and a narrowing of the pulmonary valve which reduces blood flow to the lungs. The first thing Dr. Chan told us was not to Google the condition. ToF comprises a very wide spectrum of severity and fortunately, Pru was on the more mild end. The internet has a lot of misinformation and information that just wouldn’t apply to her case. She told us Pru would have to have surgery around 4-6 months of age, but that the success rate for the repair surgery was incredibly high and that everything was going to be okay. Even though Pru was asymptomatic, they kept her in the NICU for 24 hours just to make sure her oxygen saturation levels stayed nice and high. We went to the NICU every three hours to feed her and she was a champion breastfeeder from the start! This was important because heart babies often have a hard time eating before their repairs because they tire easily and then can have a hard time gaining weight in preparation for the surgery (the bigger the better).”

Is the condition genetic or is there something someone can do to prevent it?
“It may be seen more in children with Down Syndrome and a condition called DiGeorge Syndrome, but in the vast majority of cases, as in Pru’s, the cause is not known. It may occur more often in babies who have a parent who has it as well, but if I remember correctly, those numbers are not very high at all. As the cause is generally not known, there doesn’t seem to be any way to prevent it. Though we didn’t know until Pru was born, many babies are able to be diagnosed in utero at the 20 week anatomy scan. The advantage of this is that it allows the delivery team to prepare in the event that the baby is ‘born blue’ (more severe or more complicated ToF) and needs immediate intervention before the full repair (they call this a temporary repair, and perform what is called a Blalock-Taussig shunt, which allows more blood flow to the lungs).”

Tell us about your time leading up to the surgery.
“In some ways, waiting for surgery was the hardest part. You have to watch for something called ‘tet spells’— periods when the baby’s oxygen saturation levels drop and they can turn blue. They tell you not to let your baby cry too hard or for too long to help avoid this. Of course, for us, this meant doing anything and everything to never have Pru cry at all. We were blessed that she never had a spell, but watching for one was excruciating. You also have to be very careful about colds and flus, not because a ToF baby can’t get sick, but because they will not perform open-heart surgery for at least 4 weeks on a baby that has recently had either of these. So, if your baby’s condition worsens and surgery is needed sooner, if your baby has been sick, this can very much complicate things. Our house became hand-sanitizer central. Our then 4-year-old took many, many baths, and often stayed home from school if something was going around. I began to see germs everywhere! Pru did get a small cold, but luckily, didn’t have her surgery until almost two months later. We saw Pru’s cardiologist and pediatrician (Dr. Noah Simons) pretty frequently and they were instrumental in keeping our spirits up and keeping us going. Pru had a couple more echos and tests, and they monitored her closely to make sure her condition remained stable. By far, the hardest part of this wait was when our surgery date was rescheduled four times. This was no one’s fault—it’s just something that happens when you’re having a procedure at a world class hospital like Stanford. A ‘stable’ baby like Pru has to get bumped for a baby who needs a heart transplant or some other type of immediate surgery. And there are only so many beds in the CVICU. If there is no bed, they cannot do the surgery. As much as I knew all of this, every time we would get bumped, it would crush me. You pack the bags, get your mind ready for what’s to come, and then have to do it all over again. It’s very hard.”

Tell us about the day of Pru’s surgery.
“Her surgery was the first one scheduled for her surgeon, the brilliant Dr. Reddy (now at UCSF). We were at Stanford at 6 a.m., and surgery was slated to start at 7:30 a.m. Pru was a bit cranky, as she hadn’t eaten since 3 a.m., but was a trooper as always. Nick took pictures of her while we waited. I remember thinking, ‘What if this is the last picture we take of her? What if this is the last time I see her?’ Even though I knew that this surgery was extremely successful, I couldn’t help but be afraid. My daughter, my little 3-month-old daughter was going on bypass. It was too much to bear. Eventually they took us back to prepare her for surgery. We had to put her in a tiny hospital gown and tiny little socks. The anesthesiologist (Dr. Danton Char) came to talk to us. I started crying and couldn’t stop. I couldn’t do it, I told him. I couldn’t hand her over to them. He told me this is what he would do for his daughter, that Dr. Reddy was the best, and that it would be okay. I gave her a kiss and a hug, and we handed her over. We then went to wait. After about four hours of waiting, we were told that she was off bypass. I have never felt more relief in my whole life. About an hour after that, Dr. Reddy came down to the waiting room with a smile on his face. It was like seeing an angel. Truly. He told us that she did really well, that everything went really well. They were closing the incision and we could see her shortly. I’ll never be able to express what that moment felt like. We went up to the CVICU and there we saw her being wheeled in. She was so small on this big bed, and her little eyes could barely open. She was surrounded by a team of doctors and Dr. Char. He smiled at me and said, ‘It couldn’t have gone better.’ I think about that moment every day.”

What was her recovery period like?
“Pru spent two days in the CVICU with the most incredible team of nurses and doctors at her side. She was then transferred to the step-down unit, 3West. Three days later, we were able to go home! Five days after open heart surgery, our brave baby girl went home! They sent us home with a medication for fluid retention and Tylenol for pain. She barely had to take the Tylenol and was off the Lasix after two weeks. Babies are so incredibly strong. It blows my mind. We couldn’t pick her up under her arms for six weeks because her sternum needed to heal, but other than that, she was pretty much back to her old self. Pru has always been an incredible sleeper, and she pretty much went back to her old routine. One difficult thing was that she didn’t want, for some reason, to go back on the breast after surgery. It could have been that she was off too long (we gave her bottles in the hospital because they wanted to monitor her intake closely) or that it was uncomfortable for her, but that was hard on me. It felt like another loss. We did everything we could to get her back on, but in the grand scheme of things, it was a very small price to pay. I was able to pump until six months, and Pru has continued to thrive.”

What were some of the biggest comforts to you while you were going through this stressful process?
“My husband, Nick, was incredible. He’s always been the rock of our family, but he truly held us all up. I cried many, many times. Felt like I couldn’t bear the pain, and he reminded me that I could and that Pru was going to be okay. He took meetings and answered emails for me (for both Press and West Coast Craft) when I couldn’t, and never once balked at the load. A number of friends connected to me to other parents who have gone through this, and talking to people who knew what this felt like, was tremendously helpful. Hearing that their kids were all doing great and were completely ‘normal’ health-wise got me through the darkest moments. I also joined a couple of ToF Facebook groups. The parents on there helped keep me positive and the adults with ToF who posted on there, reminded me that most kids with ToF go on to lead, long, normal, happy lives. I connected with one heart mom in particular who has since become a dear friend. She is overseas, but I know when I finally get to meet her in person, it will be like seeing an old friend. It’s amazing how total strangers will help you when you need it. It has been a beautiful thing to be a part of. Also, those friends and family members who called and texted and didn’t expect a response, but just wanted me to know they were there, I am so grateful to them. We had friends leave bags of groceries at our door, bring cookies, send little notes. All amazingly kind and thoughtful. Working for myself was also a huge comfort because we were able to stay home with Pru and be with her nearly every second before the surgery. I am acutely aware of what a luxury this is, and it makes me sick to think of the parents who don’t have this option, who have no maternity or paternity leave to speak of. The West Coast Craft team really rallied together to help me and Nick. The summer 2015 WCC was just one month after Pru was born, and it was through their banding together and taking care of business that it went off without a hitch. They went above and beyond the roles of co-workers and I’ll never be able to thank them enough. I also started therapy shortly after Pru was born. I recognized pretty quickly that I needed an outlet to talk about what I was feeling and voice my deepest fears in a neutral setting that was mine alone. It helped, and continues to help, tremendously.”

Was there anything that friends or family did that was not so helpful?
“There were a few instances where people wanted me to ‘be my old self’ or for things to go on as they were. I understand that this comes from wanting to know that things are ‘okay,’ that I am not changed for the worse. I know it doesn’t come from a selfish place. But it’s hard to explain to someone that you are changed, that there are days when you don’t know if things will be okay. It’s impossible to be your old self when all you can think about is that during the surgery, a machine is going to breathe for your daughter, and pump blood through her veins. You don’t always want to explain this either. I think when friends and family just listened and let me ‘be,’ whatever that was on that day, that was all I needed.”

Pru seems like she’s “out of the woods” now. Is there anything you have to be careful about with her because of her condition?
“Pru is doing so well! She has to see her cardiologist every few months, and eventually, those visits will become yearly. The way things look now, she probably will have very few restrictions, if any at all. As I mentioned above, ToF is a wide spectrum, so each case is different, but most of these kids go on to have normal, lovely lives. She may need something done to her pulmonary valve when she is a teen or adult, but we don’t worry about that too much. If and when that happens, we know she’ll be in the best hands. And the fantastic thing about all these heart kids surviving and thriving into adulthood, is that there is an incredible amount of research being done towards their care and management. The technology is improving and innovating at an amazing rate and all these kids and adults with CHDs are benefiting because of it. We are so incredibly lucky that people devote their lives to making kids well. It’s kind of a funny thing in the CHD community, but any parent of someone with a CHD, especially ToF, will tell you that the Olympian snowboarder, Shaun White, has ToF! He had two open hearts as a kid and look at him now! These kids are so, so incredible!”

How was it continuing to raise Augie when you were dealing with such a traumatic situation with Pru?
“Once I got over the shock, and we were settled into our routine at home, it was easier than I thought. Because Augie had just turned five and we could explain things to him, we were able to let him know why he wasn’t going to school that day or why we had to make sure Pru didn’t cry too much. With the help of my mom, we tried to make days really special for him, so that he didn’t feel ignored or forgotten. He has his fifth birthday one week before the surgery and we surprised him with a room filled with balloons and presents. He had me and Nick to himself the whole day! And he actually helped keep us grounded because he is always so full of joy and laughter, it is hard to be sad when he is around. He spent time at the hospital with us, and saw Pru in the CVICU with all of her tubes and bandages, and he handled it really well. We always explained what was going on to him, but made sure he had plenty of ‘kid’ time, as well. All of his teachers and the parents of his friends were incredible. Extra play dates or rides home or letting us know if other kids were sick—they all did their part to ease our worries.”

What would you say to another mother going through such a trying experience?
“I would tell her that although you think you aren’t strong enough to handle this and that this will break you, you will find that strength and you will not be broken. It will be incredibly hard. Waiting for that surgery and the day of the surgery will test you in ways you haven’t been tested before. But trust your doctors. Trust the nurses. Trust your partner. Trust yourself. Most importantly, trust your baby. She is the strongest, bravest thing and she will be okay.”

How has this experience changed you as a mother? As a person?
“As a mother, I think I am more patient, more relaxed. I don’t worry so much about strict bed times or the perfect lunch. I just want my kids to be happy and healthy. I do find myself worrying about their safety more than I did before. I mean, I always made sure that they were safe, but maybe worrying about something crazy happening that I can’t foresee (like a heart condition!). But I try to manage that by talking it out with Nick or my therapist. I don’t ever want them to be fearful or not live their lives to the fullest. As a person, well, I’m still trying to work that out. Most days I feel better and better, and the surgery feels farther and farther away. Were it not for the scar on her chest, you wouldn’t even know what Pru went through! I do have some hard days; days where I look at pictures of us at the hospital with her and feel so sorry for the mom and dad in the photos who look so tired. I like to think I’ve always been an empathetic person, but I feel it so much more now. Sometimes too much. I know what that mom felt when that doctor told her something was wrong. The relief still comes in waves, and sometimes it is overwhelming. Sometimes it comes with guilt. Guilt that Pru made it and some babies don’t. I feel scarred, but stronger. Battle bruised, but better every day.”

Anything else you’d want people to know?
“I guess I’d want people to know that kids with CHDs are tough little fighters who generally do and will do very well. That hospitals like Stanford Children’s are places of hope and miracles, and that we are so, so lucky that they are filled with amazing people who dedicate their lives to making kids well. And also that my sweet Prudence is the joy and light of my life. I don’t know what I did to get so lucky to be her mother, but I’ll spend the rest of my life making sure she and her brother are happy, loved, and loving people.”

Take a look at the lovely, lucky family in the slideshow below.

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