Hanna Hsu Update

Many friends and patients have asked about updates to my daughter and her congenital heart defect. The memories of those long, grueling and depressing nights at Children’s Hospital Los Angeles (CHLA) have seared a permanent scar in my life and it’s not something I enjoy reliving. However for the sake of closure, I will try and summarize those traumatic events rather quickly…. We will begin during the time after Hanna’s first successful open heart surgery (Blalock shunt procedure) – performed when she was around 9 days old …

The months that we spent their holding Hanna’s little hands and hoping for the day that we could take her home seemed endless. It’s interesting how we take the simplest things in life for granted. I remember watching other babies effortlessly drink a bottle of milk on their own, in one feeding and contemplating how lucky they were …. we were struggling just to get Hanna to drink 1-2 milliliters (mls) of fluid using a pipette. During those harrowing nights in the hospital, our ears would be engulfed with the sounds of multiple alarms going off every few minutes as a result of other infants on the floor losing oxygen too rapidly or with the perpetual screams of pain after having their chest bones cracked open during open heart surgery. Sometimes my wife or I would get up from our area and try and comfort the other babies … but honestly how to console an infant who only weighs 5-10 lbs, has a fractured sternum with multiple stitches down a 5-7 inch incision, tubes protruding out of their nose, arms and legs and suffocating from hypoexima (from not being able to supply enough oxygen to your brain because of a defective heart)? Then on those rare, dreadful occasions, we would hear a different alarm go off across the floor, followed by an emergency code announced over the speaker and finally accompanied with the sounds of hurried footsteps as a wave of nurses and doctors rushed to an ominously silent infant. Those horrible nights seem to last an eternity in the hospital … nights went into days and then into weeks and ultimately into months. Even when we were finally ready to bring her home, Hanna had to be monitored carefully – not to have her cry for too long or her lips and face would turn blue or not to over tax her body from the exhaustion of trying to drink 10-15 mls of milk. All the while my wife or I would be prepared to administer emergency infant CPR should her her heart fail. Thankfully gone are the days of having to strap a pulse oximeter monitor on her little fingers with alarms and oxygen tanks stored near her baby crib.

Hanna would eventually need a second open heart surgery at around 6 months old – which we had to push to get modified. My wife had forwarded her case to Best Doctors for review. They then sent her file to Dr. Nido over at Boston Children’s Hospital. (Many experts consider him the top pediatric cardiovascular surgeon in the world). He had recommended that we do decompression of the hypoplastic right ventricle during the Glenn surgery – in the hopes that we stimulate growth of her right ventricle therefore avoiding a third open heart surgery. After review of the recommendations, CHLA and Dr. Starnes (another one of the world renown pediatric cardiovascular surgeons) agreed to proceed with this modification given that there was little additional risk and it would give Hanna a chance to improve her heart condition. Fortunately, the surgery went well, and our baby girl only needed a few weeks of recovery at the hospital (vs the few months after her first surgery).

Hanna Hsu 2020

Fast forward to today (11 years later). Hanna is doing well. She still has her bi-annual cardiovascular check-ups. So far, she has avoided the need for any other surgeries, and we hope that the surgery modification that they had performed during the Glenn, may perhaps set precedent in helping other children with similar defects. While her blood oxygen level is still not comparable to that of a healthy person, she is for the most part healthy and has grown into a bright and beautiful girl.

Due to her heart condition, Hanna’s physical endurance is a lot lower than those of her peers. However, she has found enjoyment in other non-physical activities, such as reading and writing. Recently we are proud to announce that she won first place in the Clear Water TBM Naming Contest:

In Memory of Dr. William Wei Hsu

February 3rd, 2017

Last night at around 8:00 pm, I sat at my desk in my group practice, looking at a pile of about 50 patient charts that I needed to finish up. I was thinking, how in the world was a going to write the closing eulogy for my dad’s funeral, taking place tomorrow? My thoughts were interrupted with the beeping of my cell phone. I looked down on my screen and saw that my sister, Serena, had sent me a text with a copy of her speech. My sister has always been the better writer in our family. Seeing how incredible her eulogy was made me feel proud, but at the same time, it made me apprehensive because I knew I would have to follow. Then as I scrolled further down my phone, I saw that Serena was trying to help me, by writing a rough draft of my closing eulogy. If  Dad was with me last night; I could already imagine the look on his face – frowning down at me for trying to find the easy way out. That thought was all the encouragement I needed to throw out my sister’s draft and get to work.

Today, this morning on the day of the funeral, I was contemplating about what to say, while driving in the rain to a job site to pump and work on a feasibility plan to re-route or replace some septic tanks. It was ironic because when I was a kid, I remember my dad telling me, “You better work hard or you’ll be a garbage man.” I hope Dad would not be disappointed that this was one of those rare times that I proved him wrong. I was indeed working very hard … on preparing to oversee and design the septic system for a house. However technically since I was still working with sewage and garbage, I guess I could be misconstrued as a doctor who on his off days worked as a “garbage man.”

My dad’s relationship with me was not one of many words– he didn’t have to say a whole lot to get me going, just a simple look maybe a short statement and that would be enough. My father was a great man backed by an overwhelming number of accomplishments and yet he refused to accept his own greatness. To this day, I still remember the time he was helping me with my High School AP Physics class homework. He had come back from work late at night, had a small dinner and at around 11:00 PM, he was trying to teach me how to go about solving a complicated physics problem, without actually doing the work for me.  I was frustrated and said something to the effect of, “I can’t do it on my own, I’m not smart like you.” There was an immediate pause as my dad lowered his head ever so slightly, looked directly up at me. Letting his glasses slide just barely down the bridge of his nose, he used those stern eyes to erase my last words. He then told me that he was not a very smart man, that he had above average intelligence and that he was only able to get by in life because he worked hard. As he said those very words, I looked up at the wall to see his PHD, various Masters degrees and other accolades. My dad had so many awards and patents that there was literally a pile of  plaques stacked  next to him because there was not enough wall space to hang everything.  I think my dad was right; he was not a “smart man” … he was a genius.

In regards to that physics homework that he helped me with; well a problem similar to that appeared later when I attended college. I was sleeping and snoring obnoxiously loud in a chair during one my physics lecture at USC. This particular physics professor had a habit of embarrassing disruptive students. So he threw an eraser at me, to wake me up. The professor then told me to come up to the front and solve a difficult question on the board. So I got up, strode confidently to the front of the class and in my head I thanked my dad. I took that marker and with no hesitation, I  solved that physics problem with ease. Afterwards, as I went to sit back down, most of the class went silent with astonishment – except of course for my friends, who were laughing and trying to high five me – they said something like, “Holy [blank], you are one smart [blank].” I just shook my head in denial and said, “I’m not smart, I just had a genius teacher.”

Fast forward to only a few weeks ago. I still remember when Dad was laying in his bed, fighting against all his ailments with more strength and courage than I could ever imagine. That day his mantra of telling me to work hard had changed. While by his bed side, he told me to not work as hard as him because life was short. Behind that simple statement, I knew he meant that he wished he could have spent more time with us as family, instead of always being out all day, working so hard to provide for us. In his final days at the hospital, the doctors were amazed that even though Dad looked deceivingly frail, he was incredibly strong and continued to fight, working hard for every breath … until the very end.

Dad would be extremely uncomfortable with all of us sharing these remarkable things about him. So, as we say goodbye to him, please remember the things we love so much about Dad. I know in his afterlife, he would be standing there with that great big smile and he would be so proud to see all the people here, who loved and admired him. I love you, Dad, and I’ll miss you more than any words can say.

Xie  xie  Fa Shi  min,  Hui Zhang  Shao Yifu,  Xiao Ai Yi,

gen  Jin Zhong Shehui  da  hui renmen.

Xie xie dajai bang mang , hai you suoyou da qin qi gen pengyou. Xie Xie nimen lai.

On behalf of my family, I would like to thank everyone for being here today. We appreciate the Buddhist monks, the Amida Society president Uncle Jason Chen and Aunt BT Chen, Amida Society members, our relatives, and friends for spending the time to come out to honor our Dad. Burial services will be held this afternoon after 2:30 PM in my family’s burial grounds, at the Gardens of Contemplation. Thank you again.

Pre-labor Surprise, Entry # 1

*Please note that newer entries for my personal blog are published in reverse order (newer posts are published at a later date), so that the true story of my family can be told in chronological order. The real date of this post is July 20th, 2011*

On  Tuesday, January 19th, 2010 sometime in the morning, I was working on a patient, when my staff informed me that my wife was on the line with some urgent news. I quickly excused myself to answer her call. My wife, who was 9 months pregnant, told me she was at her obgyn and was having strong contractions. Her doctor advised that she go over to the hospital immediately. Because the hospital was about 8 miles away from the obgyn, my wife said she would drive herself. I didn’t’ feel comfortable about her driving, so I told her to wait for me. However because I was over 50 minutes away, the doctor said she should not wait that long and that she would be fine to drive herself. My wife also said, it’s possible that this might be another false alarm and did not want me to inconvenient my patients for that day.  Knowing that it would probably take too long to get to her and not wanting to argue with my wife during her contractions, I grumbled and helplessly agreed. If there’s one thing I learned from all those Lamaze classes – never argue with your wife when she’s about to go into labor.

Besides my wife did tell me that she would call me as soon as she got to the hospital. When I didn’t get a call from her half an hour later, I got concerned. Right after I finished treating my patient, I got on the phone and gave my wife a call. She answered her phone and calmly told me that her water broke.  I got extremely anxious and asked how – what – when?!

Apparently when she parked her car at the hospital, her water broke. She was complaining about how she was upset because she had just washed the interior of her car. I could still remember the wonderful details about how amniotic fluid stuck on the carpet of her car and dripped all over the concrete…leading a nice trail up to the five star Huntingtong Memorial Hospital doors… Somehow she ended up in the hospital cafeteria … When I asked why she wasn’t getting admitted into the hospital, she said, “Don’t you remember in labor class, they said once your water breaks, the hospital will not let you eat anything solid until you give birth. And I didn’t want to be hungry!” Imagine that … my wife, 9 months pregnant, standing there in the middle of the hospital cafeteria, scarfing down a cup of split pea soup, wearing her nice work pants – completely drenched and dripping with uterus fluid…

* Too be continued on the next post titled “Rough Night at the Hospital” *

Rough Night at the Hospital, Entry # 2

*Please note that newer entries for my personal blog are published in reverse order (newer posts are published at a later date), so that the true story of my family can be told in chronological order. The real date of this post is August 16th, 2011*

After getting off the phone with my wife, I had my patients cancelled for the rest of that Tuesday and all of the next day, Wednesday. I let my office manager know to keep the Thursday scheduled for our patients in order to offset for the other closed days. I then headed straight home to pick up the over-night hospital bags for my wife and myself.

That late afternoon on Tuesday, I was finally at my wife’s bedside. I remember stepping into her labor room for the first time and seeing her in her light blue hospital nighty sitting on her bed wrapped in a blanket, watching TV. Something about that moment still sticks with me. Her skin had a golden shine and face was beaming – delighted that I was finally here. I felt relieved and happy that she was doing “okay” and that we were finally getting ready for that big day at the hospital. I walked over to her bed gave her a light kiss on the cheek and sat next to her.

After about 14 hours of labor, my wife was still only 3 centimeters dilated. Her doctor informed us, that it would be at least another 9 hours before she would be dilated enough to give birth. Because of the pain from her contractions, my wife asked for an epidural so that she could get some rest. I could still remember the hospital recliner that I was trying to sleep/rest in next to my wife. You would think that for $10,000 a night, such a highly rated five star hospital  would be able to provide more comfortable accommodations. Let’s just say I think I’ve slept better in my college years on the floor of the bathroom next to a toilet after a USC party.

I think my wife could hear me tossing and turning. At around 3:30 am, I remember her opening her tired eyes and telling me to just go home for a few hours to get some rest so that I could be back bright and early. Knowing that I would need my strength and not really wanting to argue with my wife, I somehow made it back home around 4 a.m. As soon as I got home, I hit the shower and fell flat on my bed asleep.

I woke up around 6:30 a.m. to the sounds of my dog barking. Mochi, my shit-poo dog (Shihtzu/Poodle) was pretty angry because I had forgot to feed and give her water the night before. Somehow that didn’t stop her from laying a nice large dark pickle in the hallway. I quickly cleaned up her mess and gave her enough food and liquids to last the next few days. Moments later, I rushed back to the hospital.

When I arrived at the Huntington Memorial Hospital, my wife didn’t look so great, She looked very pale and her eyes were blood shot – yet she still managed a weak smile as I entered her room. The pitocin didn’t seem to be helping her dilate – she was at around 5 centimeters dilated after about 21 hours of labor. In order to try to induce the dilation further we walked around the hospital so many times, that I became an expert at counting the number of dings and cracks on the hallway walls – 92 not including the dark scuff marks which would put it at 112.

After about 25 hours of labor, our doctor informed us that my wife was still only 5 centimeters dilated and would therefore have to go through a caesarean. At that point my wife received her 2nd epidural in preparation for surgery. Just as we finished packing up our things and was ready to check-into the surgery room, the head nurse came in and said all the surgery rooms were full and that we would have to wait till one was available. Two hours later, we were informed again that a room was still not available. To this day I’m not sure why they didn’t let us know earlier, so that my wife could at least rest on her hospital bed. My nine months pregnant wife was about to burst and basically had to stand around or sit on the edge of the chair because we had to be ready at the snap of the fingers, to admit her into surgery. I kept thinking in my head at that time that we had done our research and Huntington Memorial was one of the highest rated hospitals in our area – it was hard to imagine how it could have been worse at any other hospital. My train of thought was broken when the nurse finally came in and said a surgery suite was available … my wife had suffered another 3 hours of labor waiting for that room, putting the grand total at 28 hours of labor.

* Too be continued on the next post titled “The Happiest and Saddest Day of our Lives” *

The Happiest and Saddest Day of our Lives, Entry # 3

*Please note that newer entries for my personal blog are published in reverse order (newer posts are published at a later date), so that the true story of my family can be told in chronological order. The real date of this post is September 25th, 2011*

I was lead to a hallway area near the surgical room to wait, while my wife was being prepped for surgery. Sitting there, I could feel excitement of welcoming a new family member into our world and at the same time a sense of relief that my wife’s pregnancy and long labor will soon finally be over. After about 15 minutes, the nurse escorted me into the surgical suite. My wife was on the table in her hospital gown. They sat me next to my wife on the right side near her head and allowed me to hold her hand.

I could not see what was happening because they had her mid section covered by a barrier – I’m sure this was to protect the eyes of the average husband. I’ve heard of grown men vomiting all over their wife or even passing out on the floor from watching this type of surgery.

I nearly jumped out of my chair as the terrifying screams of my wife interrupted my muse. A few minutes into the surgery had passed and my wife was screaming as if she was being butchered alive. Her face turned a ghastly white and her body was jolting in pain. Her right hand was squeezing the life out of my hand; the deathly grip was so intense, that I thought the bones in my hands would break. The nurses ran to her side in preparation to hold her down and I tried my best to console her. Apparently the epidural and anesthetic was not working, most likely because the length of her labor had lasted too long and her body was building a resistance to the medicine. So she could feel everything during he caesarian. At this point they could do nothing but press on with the torturous surgery…

A few minutes seemed to last a life time as the cries of agony from my wife filled the room.  Moments later our baby girl was born and the screaming from my wife settled. Our baby girl, Hanna weighed a whopping 9 pounds and 2 ounces and was 23.25 inches tall.  Please keep in mind that my wife is by no means heavy set – at least for now! Prior to her pregnancy, she was 112 lbs. The average baby weight in the United States is usually 6-7 lbs. After I cut the umbillical cord and Hanna was cleaned up, I brought her over to my wife. The touch of her baby seemed to calm my wife down some more and she managed a faint smile.

After they closed up my wife she was carted away and I was brought into a room, while they checked the condition of our baby girl. A feeling of happiness rushed through me as I was holding baby Hanna, I still could not believe I was finally a proud father. When everything finally checked out, they told me I would have to release our baby to the neonatal nursery so that they could continue her care while I visited my wife.  I watched from the nursery window as our daughter laid in her hospital crib. She was the biggest baby in that nursery. Next to her, the other newborn babies seemed like little dwarfs. Seeing that Hanna would be okay, I went to see my wife in her recovery room. My wife, Cisca was laying in the hospital bed with an IV flushing fluid and pain-killers through her sore body. I went over and gave her a kiss on her forehead and gave her an update about our beautiful baby. An hour passed and I asked the nurse when our baby would be able to join us in our room. She said it should be soon. Another hour passed and my mother and sisters met with my wife and I. At this point, I got up and went over to the neonatal nursery to see how our baby was doing. When I got to the nursery window, Hanna was nowhere to be found. I started conversing with some people next to me by the window overlooking the nursery. They were visiting and watching their newborn grandchild. When I asked if they saw a large Asian baby in the crib near the corner, they informed me that not too long ago there were about 4 doctors and a group of nurses hovering over our baby. Moments later they said Hanna was carted away.

Something did not feel right. I quickly tracked down a nurse and asked where my daughter was. They directed me to the neonatal emergency center. I immediately rushed into that department to talk with one of the doctors. One of the specialists explained that our daughter had a problem with her heart.  When, I asked if it was a heart murmur or a hole in the heart, they said no it wasn’t, but that someone would explain everything to my wife and I in a few moments. I tried to squeeze more information out of them, but they just brushed me off, and told me it would be better if I waited for a pediatric cardiologist to go over the information with us.

About another hour passed before a doctor came into our room to talk with my wife and I. Our daughter was diagnosed with a rare congenital heart disease, Hypoplastic Right Ventricle, Tricuspid Valve Dysplasia with Pulmonary Atresia. Basically the right side of our daughter’s heart did not develop properly and she was not getting oxygen delivered to her body. They informed us that Hanna would have to be immediately transported to Children’s Hospital Los Angeles for her survival and proper care. We were also informed that there were surgeries that could be preformed to prolong the life of our child. They would not be too specific about the surgeries or her long term outcome. We asked if we could at least see our daughter one last time before she was transported away. They said time was of essence, but that they would allow us to see our baby.  Minutes later, Hanna was carted into our room trapped in a clear polycarbonate enclosure with tubes and wires inserted all over her innocent little body. The sight of our beautiful baby in that condition brought an overwhelming sense of helpless despair and heavy sadness in the bleak hospital room. I could not help but think how this might be the last time we saw our precious baby. My mother and sisters broke down into tears. Cisca, my wife, who had just lost a lot of blood from a dreadful caesarian seemed like she was dazed in perhaps the worst nightmare of her life. We were able to put our fingers through a small hole in the enclosure to touch Hanna’s little hands. My wife offered some words of comfort to our baby and told Hanna to be strong. I wanted to show confidence in the survival of our baby and so it took every ounce of energy to hold  back the tears welling up in the back of my eyes as we watched our first and only baby transported away.

* Too be continued *

Children’s Hospital Los Angeles CTICU, Entry #4

*Please note that newer entries for my personal blog are published in reverse order (newer posts are published at a later date), so that the true story of my family can be told in chronological order. The real date of this post is October 31th, 2011*

To no surprise, I did not sleep well that night … it didn’t seem to help the fact that I had to go to work on that next day. I remember going through the motions of my daily routine and going to the office. Everything felt so surreal almost like I was living a really bad dream. Walking around like a zombie with a numbness crawling up my brain and down my fingertips. Just waiting … or rather, hoping for someone – anyone to pinch me and wake me up.  All I could think of was getting through the day so that I could go over to Children’s Hospital after work to see my baby girl.

By the time I got out, it was a little past 7 o’clock. My wife had called me; she was in pain from her cesarean and wanted me to come see her at Huntington Memorial. So I quickly jumped into the car and drove straight to the hospital. I arrived to see my wife in bed, looking very haggardly – I’m sure my tired body didn’t look much better. She was in pain and had a hard time trying to do daily activities. The nurses at this so called 5 star hospital were of little help – they would make my wife try and do things on her own, even though every step she took her stitches would open and fluid would hemorrhage out of her incision. I remember my wife looking at me- we were both really tired, I was torn between leaving my wife alone here and running off to see my sick daughter. I could tell my wife was concerned with how tired I was and afraid that I would fall asleep and get in a car accident on the way to see my daughter. I called the cardiothoracic intensive care unit and children’s hospital in Los Angeles.  The nurse there said Hanna was stable and that my sisters and mother had visited her that day. I think the nurse could tell how tired I was; she recommended that perhaps it would be better that I came early in the morning since it was already getting late. I finally succumbed to my weariness and the advice of my wife and the nurse, I would get some rest that evening and head out early morning to see Hanna.

I was up early the next day. Had some breakfast at the hospital, made sure my wife was okay and was off to Children’s Hospital LA. Upon arriving at the hospital, I checked in at the front and had them look up where my daughter was. The receptionist said she was in CTICU and made a call up there to verify that I was authorized to go up. Apparently they only allow 2 people up in that unit. Once I got the okay, I walked through and up the elevator. The place was rather large, lots of signs and different departments. There were many pictures on the wall with children experiencing various congenital heart problems. They had their birth dates … and their demise date. Some only lived a few weeks, many only a few years and others passed away at their teenage years. I could feel a pit starting to form in my stomach and refused to read any further. I immediately went up to the cardiology department counter and asked to see my daughter. They asked me to wait in the waiting area because one of the cardiology specialists wanted to speak with me.

Fifteen minutes later, I was escorted into one of the exam rooms to the side and met with Dr. Ahdoot. He was very patient with my flurry of questions. Currently Hanna was on PGE1 to keep her PDA open and she was on back up life support. Normally he would not have gone into so much detail because most parents would not understand the extensiveness of the surgeries and or the complications of my daughter’s heart condition: hypoplastic right ventricle with tricuspid valve dysplasia.

Once I understood the severity and risks of my daughters defect, everything that I experienced from the past few days finally crushed me like a ton of bricks. I could not bear the weight and ramifications of my daughter’s condition … of the fact that our daughter may not live past her first surgery … and that IF she survived the first, there would be many more major surgeries to follow … after which I feared she would never be that healthy, bright and happy girl that I had always imagined. I kept thinking how it was so terribly unfair for a parent to out live their child. Unable to hold back the wave of emotions, I crumbled down, a flood of tears washed down my face as I somberly cried for perhaps the first time in 18 years.

Dr. Ahdoot handed me some tissue and offered some words of encouragement. He told me a story about a good friend of his, who was also a pediatric cardiologist. That doctor was born with a similar congenital heart defect. His friend was in his late forties and continues to treat children with similar congenital heart defects like Hanna’s. He also pulled out a picture in his email, showing a family who moved up North, who had a daughter also with a similar heart defect. She was currently doing well at the age of seven. More importantly he showed me that the couple had three other healthy children in their family. I realized that life still goes on and that there was still hope for my daughter.

After my meeting with Dr. Ahdoot, I was then escorted to CTICU to the room where Hanna was resting …

* Too be continued *