November 13, 2015 our world as we knew it would never be the same. It was the day where our world came crashing down. It was the day we unexpectedly said hello and goodbye to our beautiful son Henry Anthony Bastian.
Although this blog is mostly about Wally and his battle with Barth Syndrome. Our story with Barth syndrome actually began when I got pregnant with our first son Henry. We just didn’t know it and wouldn’t know or understand until three months after Wally was born.
Today would have been Henry’s third birthday… Three whole years without my baby. Although I’ve cried many tears today, I thought what better way to honor him than to share his story with all of you. Beware. It’s long. And it’s not full of rainbows and sunshine. Our close friends and family know the story of Henry. But I’ve never actually written it out for the world to see. I’ll start from the beginning.
2015 was an eventful year to say the least. I was a sophomore in college pursing my nursing degree. On January 13th (10 months to the day Henry would be born) my real dad passed away from cancer. In February AJs grandpa passed away. Two weeks later I found out I was pregnant. I have a condition called PCOS so for me to become pregnant without even trying was a huge shock! Although I was scared out of my mind. I mean I was still in nursing school!! How could I handle a baby and school? But at the same time I was thrilled. And determined to make it work. We called Henry our sweet little miracle.
Looking back, I guess you could say I should have knew something was wrong. Through out my whole pregnancy I had this doom and gloom feeling. This dark thunderous cloud hanging over me. I would say something isn’t right. He doesn’t move much. I have this terrible feeling somethings wrong. People and my doctor would say, “it’s first time nerves.” “He’s fine.” “It’ll be ok”. But he wasn’t fine and it would never be ok and forever till this day I wish I would have pushed harder. Done something. Followed my gut. But the what if’s get me nowhere so I try not to dwell on it.
On November 11th I went in for my post due date check. I was 40 weeks and 3 days. They did an NST. Which is where they hook you up to a monitor to monitor the babies heart rate. Well they didn’t like what they saw, so they took me back for a BPP. A BPP is a bio physical profile which is basically a sono with things they have to observe the baby doing and it’s scored. I’ll never forget the sono tech did Henry’s BPP twice. She had this look on her face that seemed unsure. I remember feeling anxious and asking her if everything was ok. She said it was. But I wasn’t convinced. The midwife came in explaining he looked perfect. That he was just a lazy baby and running out of room. I remember walking out of that appointment feeling defeated. I remember calling my husband and my mom crying because something felt off. I felt like I wasn’t being heard. I honestly felt crazy and paranoid. But I kept swimming and tried to stay positive.
November 12th–40 weeks 4 days. All day I felt off. I felt anxious. On the verge of a panic attack. I was extremely hot. Shaky. I hadn’t felt Henry move much at all, all day. But I went out to dinner with some friends from nursing school to hopefully distract myself. The whole dinner I was a mess. A nervous, anxious mess. I told my friends I think my blood pressure is high. I think they thought I was crazy 🤷🏻♀️. I went home, got on my exercise ball, and watched Greys Anatomy. After Greys I couldn’t take the way I was feeling anymore. With my blood pressure cuff and my husbands help I took my blood pressure. It was high. 160s over 90s I believe. I immediately began to panic and went to CVS to check it on their machine. Unfortunately it showed the same results.
Now mind you it’s like 9pm at night. I seriously felt like I was spiraling out of control. I went home took a shower to try and relax. Called my doctors office. I won’t go in to details about that phone call because I don’t want to throw out names or disrespect anyone. But I can and will say this. I wasn’t being heard. She made me feel like an idiot. I was told to lay down and do my kick counts. Which I had already done. I was advised that if I felt like it, I could come in. After going back and forth, and discussing with my mom and AJ we decided I needed to go. So off to the hospital we went at approximately 11pm.
After arriving at the hospital everything seemed like it happened so fast. They hooked me up to the monitors and you could tell they didn’t like what they saw. Henry’s heart had no variability on the strip. The same thing it showed the day before. No variability means his heart rate didn’t go up or down. It just stayed at the same number. They gave me oxygen. Juice. Crackers. Trying to see if he would move or show any kind of excitement. He didn’t… the doctor on call decided to admit me. Finally! Someone was listening.
The doctor did a sono and saw that Henry had fluid around his liver and that I was right he should be making bigger movements. I told him that the midwife said he was just a lazy baby and running out of room. He told me to never let anyone tell me that a baby is lazy. There is no such thing. I began to start panicking. There was something wrong. Like really wrong. I was trying my best to not cry. But I made AJ call my mom and tell her to get here. The doctor on call for the hospital called the doctor who was on call for my doctors office. And thank the lord it was who it was. Dr. Bochantin is soo amazing. And she not only would deliver Henry. But Wally as well.
The memories are a bit hazy. But when she got there she started talking csection. And that we needed to get Henry out to assess further what was going on. I opted to try a contraction stress first. It’s where they put me through three contractions to see if Henry could handle it. Well his strip showed the same. No variability in his heart rate. At this time my mom and dad showed up and Dr. B encouraged us that we needed to do a csection and we needed to do it now. We agreed. With tears in my eyes. A lump in my throat. I kissed my mom goodbye and off to the OR we went.
It’s crazy what you remember when you go through a trauma. I remember the smell of the OR. The lights. The sounds. I remember how nervous I was. How scared I was. I just kept praying over and over again. Squeezing AJs hand. Looking at him for reassurance that everything was going to be ok. At 4:51am in November 13th Henry Anthony Bastian was born. He didn’t cry. I kept waiting for that cry. Praying to God, “please let him cry. Let him breathe. Let him live.” That cry never came. I vaguely remember hearing a whimper. I also remember the nurses and neonatologist saying “Come on buddy, come on.” I remember looking over and seeing his foot move. But still no cry. I looked at AJ and said somethings wrong. He should be crying by now. He kisses my forehead and said he’s ok babe. He’ll be ok. But I knew in my heart. He wasn’t ok.
It seemed like hours but maybe only a few minutes. They scooped up Henry and took AJ with them to the nursery. You could tell AJ didn’t want to leave me but I reassured him that I would be fine. Henry needed him. And than I was alone. Alone while they stitched me up. Alone in my thoughts not knowing what was happening. In recovery I made my amazing nurse, actually insisted, that she get my mom and find out what was going on. When my mom walked in, my heart sank. She was crying. And she said, “I’m not sure. But it’s not good Kelsey.” Another nurse followed her in and said they were doing chest compressions and trying to stabilize him. Chest compressions!? That means he coded. His heart isn’t pumping. I started shaking. My mind beginning to shut down. I didn’t realize it than but my body was preparing itself for the earth shattering news I was about to be told.
Not too long after… they wheeled me into the nursery. There was people everywhere. A stretcher and the transfer team from the children’s hospital that was right next door (they were going to transfer Henry once they got him stable, but he never stabilized). Doctors. Nurses. But I remember the first thing I saw was AJ. In the back of the nursery. On his knees with his head in his moms lap crying. At that moment I shut down. My body literally shut down. I barely heard the neonatologist when she said “we did everything we could. We aren’t sure what happened. We’d like to do an autopsy. We’re so sorry.” And I started screaming. Screaming from the heart break. The pain. The confusion. Screaming when Aj came over and held me. Screaming as they wheeled me out of the nursery. I just kept screaming.
The screaming and the crying came in waves. And it would for months to come along with the nightmares. We did get to hold Henry. We got to spend some time with him. Take photos. Family and friends came. I barely remember it. I was so in shock. High on drugs. And so unbelievably exhausted I could hardly keep my eyes open. But I couldn’t sleep either. Luckily they eventually prescribed be Ambien.
We eventually knew we had to say goodbye to Henry for the last time. I cannot even begin to describe that feeling. Saying goodbye to your child. Never knowing when you’ll see them again. It was the hardest thing I’ve ever done.
The days. Weeks. Months to follow were by far the worst days of my life. Luckily our parents took over planning the funeral. The day we buried our son a little bit of my soul was buried along with him. For two weeks Aj and I did nothing but eat. Sleep (ambien helped with that). Lay around. We were like zombies. Going through the motions. But the world kept turning. And after two weeks AJ went back to work and I went back to school to finish the semester. I needed to keep busy. I was determined to finish nursing school because I knew that’s what Henry would have wanted.
The autopsy that we eventually received showed that Henry died of heart failure. His heart was four times the size that it should have been. How my precious doctors office didn’t catch it is still a question I have to this day. He also had hydrops (fluid around his organs). But no one could tell us why. I switched doctors to the doctor (Dr. B) who delivered Henry. She was absolutely amazing. The only thing she could say was that maybe I had caught a virus and passed it to him. It would remain a mystery for two years until our sweet Wally would come into the world.
And that is the full story of our sweet Henry. I’m sure there are things I accidentally left out. As time passes I forget more and more. I can say this. The doctors and nurses that were there and helped that day will forever have a special place in my heart. They were amazing. So kind. So compassionate. And eventually (once I passed nursing school) would become my co workers who I will forever treasure. They would also be the ones to be there when Wally would come in this world! Something that will forever remain special to me.
Now that I know I’m a carrier of the gene mutation that causes Barth syndrome it’s most likely Henry had Barth Syndrome which caused his heart to fail. Obviously we don’t know for sure because we didn’t have his DNA tested. But it’s pretty clear what happened. After two years we finally have an answer. Does it make it easier? Absolutely not. But after Henry and now Wally it’s put a fire in us to find a damn cure for Barth Syndrome that’s not only taken one of our boys but other families boys as well.
It’s not fair. But life isn’t fair. And all the bad that came with losing, also came good. He taught us to love unconditionally. To never take anything for granted. He taught us life is too short to worry about the petty stuff. What could have ruined our marriage actually did the exact opposite. Henry’s death brought AJ and I closer together. Closer than we’ve ever been. I miss him so much. There isn’t a day that goes by that I don’t think of him or wish he were here. But I know I’ll see him again some day. And I’m so thankful Wally has his big brother as a guardian angel. Because with this stupid disease, Wally needs all the angels he can get. And he may just have the best one!
If you’ve made it this far…Thank you for reading. Today’s been hard. This day is always hard. But all the love and support definitely makes it a littler easier. We love you all!!
Happy 3rd Birthday Henry! We love you so much and will see you soon baby boy!
—Henry and Wally’s momma 💕💕💕
Ps. if you want to honor Henry and Wally be sure to visit the link below to buy a T-shirt or sweatshirt and all the proceeds go directly to the Barth foundation in hopes of finding a cure!! Love and prayers to you all!