Sawyer's Heart

Today we met with Sawyer's neonatologist to get a better understanding on his short life and the heart defect that took our baby too soon.

A healthy heart has four chambers. Between two of those four chambers, the left and right ventricles, there is a wall that separates the blood. In Sawyer's heart there was a "large subaortic anteriorly malaligned VSD" - simply put - a large hole where there was supposed to be a wall.

The American Heart Association defines a VSD as "A ventricular septal defect (VSD) is a defect in the septum between the right and left ventricle. The septum is a wall that separates the heart’s left and right sides. Septal defects are sometimes called a “hole” in the heart. It’s the most common congenital heart defect in the newborn."

Sawyer's VSD, the doctor explained, was large (between 5.6 to 6.0 mm).

Healthy hearts also have two main arteries that take blood to different parts of the body. The aorta, which takes oxygen-rich blood to all parts of the body - and the pulmonary valve (which branches into two arteries), which carries oxygen-poor blood to the lungs to become oxygenated.

The doctor went on to explain that Sawyer had "Pulmonary Atresia" - sadly, this meant that his pulmonary artery/valve was completely missing.

The American Heart Association defines Pulmonary Atresia as "a congenital malformation of the pulmonary valve in which the valve orifice fails to develop. The valve is completely closed thereby obstructing the outflow of blood from the heart to the lungs."

To make up for this catostrophic defect, Sawyer's heart formed several small "MAPCA's" which are small arteries that develop to supply blood to the lungs when pulmonary circulation is underdeveloped (Pulmonary Atresia in Sawyer's case).

His official diagnosis was "Tetrology of Fallot (Pulmonary Atresia) Truncus Type IV". Again, here is a better definition to help you understand the severity of Sawyer's heart defects.

"Tetralogy of Fallot with pulmonary atresia is a severe variant in which there is complete obstruction (atresia) of the right ventricular outflow tract, causing an absence of the pulmonary trunk during embryonic development. In these individuals, blood shunts completely from the right ventricle to the left where it is pumped only through the aorta. The lungs are perfused via extensive collaterals from the systemic arteries, and sometimes also via the ductus arteriosus."

All of this put together, meant that Sawyer's little heart - as hard as it was working and even with the maximum amount of help that the doctors and nurses could give him - would never function well enough to survive. If he had been full-term, there may have been surgical options for him, but this would have been if he could ever have gotten stable enough to handle open-heart surgery - to which the neonatologist explained "the outcome may have not been much different."

Sawyer was a very sick baby. With his prematurity and heart condition combined, there weren't any options for our son.

Over the past few weeks, I have felt immense guilt over the choice that we made to take Sawyer off of life support. Today, his doctor explained to us that it was only a matter of time before his body gave out. They were doing everything possible to keep him stable, and even then - his stats continued to drop rapidly.

The doctor told us something today that I will never forget as a mother. She said "There was only so much we could do and what he really needed was you."

And that was it. Erik and I quietly cried as the realization of what happened to our baby boy was finally understood.

No parent should ever have to sit there and hear the things we were told today. It was painful and heartwrenching to fully understand and comprehend just how serious and fatal his congenital heart defect was.

Our journey is just beginning. And as we begin this walk down a new road in our lives, our hope is to honor Sawyer's memory by working to fund research on all congenital heart defects and premature birth.

Again, thank you all for the continued love, prayers and support. We need them now more than ever.

Love - Erik, Michelle and Sadie Williams

"Our story"

Today was my post-partum visit with my MFM doctor. We learned more about Sawyer and a lot more about what also happened to me during the pregnancy and delivery.

First things first - "Dr. Digi" sat down and went over Sawyer's brief life in the NICU and we were informed that he had a severe form of Tetralogy of Fallot - Truncus Arteriosis Type 4. We are going to get a much more detailed explanation from Sawyer's doctor when I meet with her next week - but from what we were told, his condition was not only rare, but fatal.

Dr. Digi also explained to us that Sawyer's heart defect and the issues with the pregnancy (premature rupturing of the membranes, low amniotic fluid, placental abruption) were two completely separate things. The fact that both these things occured simultaneously was extremely rare. Basically, we had a better chance of winning the lottery.

So, to try and figure out why I had such premature labor, Dr. Digi is doing a full thrombophilia work-up to determine if there were any underlying causes that we aren't aware of. I'm hoping that this bloodwork finds something because at least we could have an answer and know what we were up against if I get pregnant again.

What does all of this mean for the future? A lot.

I'm at a much higher risk of having premature labor and having a baby with congenital heart defects. But, my doctor and I are going to meet again after more testing over the next few months to determine a plan of action for the next pregnancy.

At the very least, today's visit was the furthest thing from the nightmare I envisioned it to be. I was so nervous when we arrived and was shaking so bad that I could barely sign my name when we first arrived.

My doctor's receptionist - Karla - stood up, reached over and hugged me and said how sorry she was. And we cried together.

It was at that moment that I felt "home" - My nurse, my doctor, the residents - everyone in the Maternal Fetal Medicine department have been there since the beginning - and all of them were here for me in the end.

June 1st, 2010 - The story of Sawyer's birth

I've been putting off writing about Sawyer's birth for a while now, waiting for the right moment to come. I guess today's the day...

There is a LOT of background to this story, but I really don't think a lot of it matters at this point. All I know is that I had an instinct that something was really wrong with my baby. I had it for almost five days leading up to his birth. I was in L&D triage at University of Chicago Hospital twice within that period of time. Once becauase I just didn't "feel right" and the second time because I woke up the morning of his birth around 4 a.m. soaked in blood.

I already had an ultrasound and appointment scheduled with my MFM doctor that day. After leaving L&D with a clean bill of health (as far as they could see after monitoring me for a few hours, everything was okay with me and okay with the baby) I went to have my ultrasound at the clinic then waited to see the doctor.

Everything looked great with Sawyer on the ultrasound - my fluid was actually the highest it had been in weeks(5cm - still low, but better than 3cm) and he was moving, kicking and practicing his breathing just like he was supposed to. The only other thing that was wrong was his size, which - in recent days - had got me to thinking that we should go ahead with the genetic counseling because something was wrong and we wanted to be as prepared as we could be for what might come our way.

An hour later we were waiting to see my doctor. Erik was still with me because I knew something wasn't right and I didn't want him to leave me. She came in and went over my ultrasound results and we began talking about what had happened to me earlier that morning. She had no explanation at all for what happened to me. Over and over she asked if I was SURE that I didn't urinate on myself. I kept telling her that she must think I'm crazy, but I know what happened and she believed me.

After talking about our options for about fifteen minutes, she told me I could go home and continue with the bedrest. Tears started to fill my eyes and I looked at her and said "What if this happens to me again?"

She took a step back, paused for a few moments, looked at me and said "Okay. We're going to admit you for a 24-hour observation."

Obviously I wasn't thrilled about being admitted to the hospital - and who is? But, I knew it was the right thing to do because something in my body kept telling my head that I needed to be there.

Finally around 3 p.m. I got a room. Erik stayed with me until I was admitted and I sent him home, assuring him that everything would be fine and I'd be home by this time tomorrow. We gave each other a kiss and I suddenly felt a wave of exhaustion come over my entire body.

It was around 3:30. I put the head of the bed down as far as it could go and turned on the television for a little background noise. I was more tired than I had felt in months and couldn't wait to fall asleep. I closed my eyes and slowly started drifting off...

Within a few minutes, I felt the same gush of fluid that I had felt earlier that day. My heart sank and I pressed the call button while at the same time yelling out the door for a nurse from my bed.

Not even a minute later, my nurse was in the room along with a resident who said she was going to perform a vaginal exam to check and see if my bag of waters had actually broke. I started to breathe long, slow breaths. I continued doing that for the next 4 hours.

During the vaginal exam, I felt the same warm gush of fluid as I did before. I kept asking the growing number of nurses and doctors gathering in the room what was going on. Everyone told me to keep breathing and that I had to go downstairs to labor and delivery. This is it, I thought. My water broke and Sawyer is coming. Please God, let my baby be okay.

When we got downstairs, I continued to feel these gushes of fluid. Everytime I did I told a nurse or a doctor - whoever was there. No one EVER left my bedside. There were always at least two people in the room. It was after the third or fourth gush that I actually saw the pad that was underneath me - it was completely soaked in blood. And this was after it had been changed several times in the past hour. I asked my nurse - who was actually retiring that day and didn't leave my side until delivery - "what is happening to me?" I already knew, but I needed to hear it from someone, anyone. I had to hear the words.

She grabbed one of the residents who came over to talk to me about what was happening. They told me that I was having placental abruption and that the baby had to come very soon. Another nurse had my phone and was calling my mom and Erik for me, explaining that they needed to get to the hospital immediately. I couldn't feel my hands, arms, feet or legs. I kept breathing long and slow. My contractions were coming faster - at first every four minutes - but by this point every two. I prayed Erik would get there in time.

It ws 6:30 when Erik finally got to the hospital. He rushed in and hadn't missed the csection yet. Several anesthesiologists had come to explain to me the dangers of doing the csection while I was awake. Since I had my lovenox injection earlier in the day - it was too dangerous to do an epidural or spinal. Equally dangerous was putting a woman under anesthesia for a csection. After they consulted with each other while waiting for blood to arrive from the blood bank - it was decided around 7:30 that they couldn't wait any longer - and I was going to have the baby. Alone, under anesthesia and without my husband by my side.

The doctor, anesthesiologists and nurses left the room to give Erik and me a few moments before the surgery. After everything I was told, I knew what I had to say to Erik. You would think it would be the hardest thing I'd ever have to do in my life, but a feeling of calm and peace came over me as I took my husband's hand to tell him goodbye.

I told Erik that if I didn't make it, to do all the things we wanted to do with Sadie and Sawyer. I asked him to promise me to take them to the mountains and to let them know that I'd always be there to watch over them. Erik asked me to stop talking like that, but I honestly thought at that moment, I was going to die. And that I wanted him to know how much I loved him and how much I loved my babies.

A few minutes later, a huge group of people came in to take me to the OR and I kissed Erik goodbye. I wasn't scared or nervous - at all. And to this day, I don't know how or why I felt the way I did.

When we got into the OR - they asked me to move from the bed onto a smaller table. I layed down as they strapped my arms down for surgery and began prepping my stomach for the delivery. I closed my eyes and the anesthesiologist put an oxygen mask over my nose and mouth.

All of a sudden, I was overcome with this pure, white light and feeling of warmth I have never felt in my entire life. It was so beautiful. So peaceful and pefect. I wasn't under any kind of anesthesia or drugs at this point so I know that what was happening to me was real and that I wasn't crazy. I know a tear rolled down the side of my face I was so full of this feeling of purity and light.

Two or three minutes later, the doctors said I would start to feel the medicine working and would go to sleep. This light and warmth never went away and was with me during the entire procedure.

When I woke up from the surgery - I saw Erik on my right, my mom and sister on my left in recovery. I called for my mom to come over, took her hand and told her what I saw.

While I was enveloped in this light, a baby came to me. I knew it wasn't Sawyer - and I told my mom it was James - her second son. The baby she lost at birth over 40 years ago. With tears rolling down my face, I told everyone what I saw, and that James came to watch over Sawyer...

Now I know, that James was there to take Sawyer home. And I know that I saw everything Sawyer saw, because he was still inside of me when God came to take him home.

Our beautiful baby boy, Sawyer, was born with a rare congenital heart defect - Truncus Arteriosis - and died nearly two days after his birth. The NICU team did chest compressions to get his heart beating immediately after birth. How long he was without a hearbeat, we don't know. But I'm thankful that we were able to have the precious few moments with him that we did.

One of the only things that gets me through all of this is knowing that what I saw and experienced before and during the c-section was completely real. It was so real that there are almost no words to describe it. And I know that when Erik and I were faced with that heartbreaking choice of taking Sawyer off of all forms of support - that he would be safe in the grace of God's love and light.

Every night when I go to sleep, I close my eyes to try and imagine that light again, to feel that warmth and love. And I can't. Part of me wonders if I was supposed to go with Sawyer while the other part of me is thankful to God that I'm here now with my husband and daughter.

Sawyer is home now. He is free from the pain and suffering. He will always be loved and I know he has his wings. Angel, you were born to fly. I love you Sawyer - for all eternity.