neonatalloss

Christine

Mom to Matthew

Saint Louis, Missouri

July 13, 2015

I always knew I wanted a family, but I was terrified of being pregnant.  Always having been acutely aware, in a borderline hypochondriac sort of way, of the range of things that could go wrong in pregnancy, I’d already thought of all the terrible possibilities.

Eventually deciding my desire to expand our family trumped my intense fear of statistically small probabilities of worst case scenarios, I decided I wanted to take a leap of faith, after 6.5 years of marriage.  The timing was perfect – we were both approaching 30 and finally ready for a new chapter.  We were over the moon excited when we found out I was pregnant!  And I was still terrified.

Pregnancy was easy for me, at least physically.  In the early days, I freaked out about aforementioned worst case scenarios.  Dr. Google and I were frenemies – I was an accountant by day and an internet-trained maternal fetal medicine specialist by night.  I cried during the first several ultrasounds, so scared we’d get bad news.  Much to our delight, everything went perfectly.

We found out we were having a healthy baby boy.  I let go of my fears and started to enjoy pregnancy.  I was rarely sick, felt great, and was so happy and excited.  Things were going so well that at some point, I even managed to convince myself I was some sort of mystical pregnancy unicorn.

Along the way, we fell in love with our baby boy.  We talked to him, read to him, played music for him, bought things for him, and made plans for him.  We dreamed about who he might become.  And we chose the perfect name for him – Matthew Christopher.

At 28 weeks, I breathed a huge sigh of relief.  We were way past viability, and I was home free.  I mean, I was still terrified of one of us dying during labor, but I still had time to process those fears.  I never expected that pretty soon, my whole world would come crashing down in a way that, despite all my research, I did not know was possible.

**********

After a dramatic chain of events, Monday, July 13, 2015, became the worst day of my life.  I was 32 weeks and 4 days pregnant when we lost our precious Matthew.

On Saturday, July 11, we went to bed to Matthew kicking me per usual.  That night, we giggled at how active he was.  He was always my calm baby boy, whose movements were extra challenging to feel because of an anterior placenta.  I told my husband, Mark, how thankful I was that over the past few days Matthew had become more active, which made kick counts easier.  In hindsight, maybe his Saturday night activity was his way of saying goodbye to us.

On Sunday, July 12, we went about our very busy day, which involved some shopping for Matthew.  At around 4:00 p.m., I realized I hadn’t felt Matthew kick in a few hours.  I was not overly concerned, as this was my calm baby boy.  I decided, however, it was time to get him moving, so I did all the usual tricks.  Over the course of about two hours I drank cold water, hot water, and juice, ate sugary foods, poked and prodded him, and played music for him.  Nothing.

At about 6:30pm, we decided to head to the hospital.  I still wasn’t overly concerned.  Quiet spells weren’t abnormal for Matthew.

Upon our arrival to the hospital, a nurse took me to a room, where she strapped me to a fetal heart rate monitor.  We all breathed a huge sigh of relief – she immediately located Matthew’s heartbeat – a perfect 140, normal for his gestation.  The doctors performed an ultrasound, and everything looked fine.

Doctors eventually decided, however, to keep us overnight for observation.  Matthew still hadn’t moved.  And in our time at the hospital, doctors discovered some concerning variable decelerations (v-dips) in Matthew’s heartbeat, but they assured us these v-dips were not unusual.  Although the v-dips could indicate mild cord compression or distress, there was no reason to freak out.

The next several hours were uneventful, yet excruciating.  We didn’t sleep.  Despite doctors’ reassurances, the continued lack of movement sent us into panic-mode.  The events of the night played out cruelly – it was as if someone was hitting “play”, “rewind”, “play”, with a few “slow-motions” thrown in on what had become our sick horror story.

We watched intently as the fetal heart rate strip printed out.  We analyzed every pixel on what seemed like miles of paper falling to the floor.  We tirelessly googled “decreased fetal movement” and “variable decelerations”.  We took snapshots of the printouts to send to contacts in the medical field.  We freaked out at each v-dip.

We cried, then tried to hide our despair from the professionals, who continued to assure us everything would be okay.  I got up and down to go to the bathroom.  We tried to get Matthew moving and played more music for him.  Nothing.

At one point an internet search landed on “fetal stroke”.  We asked anyone who’d listen if Matthew could be compromised – brain dead with a heartbeat.  “Impossible.  His heartbeat wouldn’t be this good,” they’d reassure us.

Overnight, it was decided we’d do a biophysical profile at 9:00 a.m. that morning and deliver early if indicated.  “It’s too early”, I said, choking back tears.

“33-weekers do really well these days,” a resident assured me.

I hadn’t processed the gravity of the situation – still thinking a healthy 33-weeker was my worst case scenario.

At 6:00 a.m. that morning, a nurse came in and informed us we could go to the cafeteria to get breakfast.  I sat up in bed, and that’s when it happened – Matthew’s heartrate dropped from 140 to undetectable – in one second.  The nurse tried to relocate his heartbeat.  She couldn’t find it.

Alarms sounded.  Doctors and nurses flooded the room.  Mass chaos ensued.  Hot tears streamed down my face.  A nurse shoved some papers at me.  I scribbled my name, consenting to an emergency C-section.  They wheeled me out of the room, and we headed to the operating room.  Mark chased behind.  They told him he wasn’t allowed in.

“I love you,” I told him.

“I love you, too,” he said through tears, then quickly began shouting reminders to the anesthesiologists to ensure they remembered I’d had one seizure in my lifetime.

Once in the operating room, they secured an oxygen mask to my face, moved me to the table, inserted a catheter, and started an IV.  I was hysterical.  Over and over, I’d ask “Am I going to die (major surgery in a panicked situation is never ideal)?  Is Matthew going to die?  Is he already dead?”

They’d reassure me, “You’re not going to die.  He’s not dead – he has a faint heartbeat.  We’re going to try to save Matthew.  He still has a really good chance.”

“What’s wrong?!” I was screaming.

“We don’t know!” someone yelled.

I prayed I’d live, for Mark.  And I prayed Matthew would be okay.  And then I was out.

**********

I woke up to a room full of teary faces, completely disoriented.  There were doctors and nurses, and I noticed Mark standing next to me.  The pain in my abdomen was unbearable.

Mark said it only took me three seconds to ask about Matthew, but I still feel guilty because it seemed like it took me much longer.  If there was any sort of delay, it’s because I was terrified to ask, because even in my shocked, disoriented state, I could read the body language in the room – somehow I already knew…

“Did Matthew make it?” I choked out.

“No,” Mark whispered, bursting into tears, “He didn’t.  They did everything they could.  They worked on him for 20 minutes.  They couldn’t save him.”

“What?!” I exclaimed.  My mind was racing…

He was born alive, and they couldn’t save him?!?!  I was in the freaking hospital!!!!  What just happened?  How could this possibly be my life?  What happened?  What happened?  What happened?  What happened?  What happened?  What happened?  How did this happen?  How can a baby be totally alive and healthy, and then just DIE – in the freaking hospital!?  My precious Matthew – perfectly healthy one minute, and then gone forever.  This has to be a bad dream, but it’s not…”

“I’m so sorry,” I told Mark.  “I’m sorry.  I’m sorry.   I’m sorry.  I want to die too.  Why am I here, and he’s not!?!?” I screamed.

I don’t remember much else about the events that took place over those next few hours.  My sister-in-law, and Mark’s aunt were there immediately.  Mark’s boss was one of the first to visit – bless his heart.  Teary faces filled the room…  The hurt in all those eyes…

During that day, family and friends showed up to offer their support and condolences.  I’d apologize to anyone who’d been excited about Matthew – I felt I failed not only Matthew, but each one of them as well.

**********

We were later informed that Matthew died from distress resulting from a true knot in his umbilical cord.  In addition to the true knot, he had two nuchal wraps.  As a result, he basically ran out of cord and tightened the knot, at which point his flow of oxygen was cut off.  The autopsy confirmed Matthew was healthy in every way.

And Matthew was absolutely beautiful – the most beautiful baby we’d ever seen.  He was a healthy 5lbs, 8ozs, and 18 inches long.  He had a full head of auburn hair.  He had my lips and nose, and Mark’s eyes and ears.  He had ten little fingers, ten little toes, and Mark’s flat feet.  He was perfect in every way – our little angel.

We held him, spent time with him, and fell even more in love with him…  At the same time, we had to say goodbye.  I’d never experienced such intense cruelty in my life – one of the cruelest scenarios life had to possibly offer – falling madly in love, then having to say hello and goodbye on the same day – in the same exact moment.

We were fortunate to receive excellent care in the hospital.  The bereavement nurse created a baby book for us with Matthew’s handprints, footprints, a lock of his hair, and other mementos.  The hospital also coordinated professional photos.  Never in a million years, even when we were driving to the hospital the night before, did we ever imagine it would end this way, so we had no clothes for Matthew.  The hospital provided clothes and blankets used in his photos.  We’ll treasure each of these items and photos forever – our memories of Matthew.

Matthew was born, died, and was baptized into heaven on July 13, 2015.  On Wednesday, July 15, 2015, we held a memorial service in his memory.  Family, friends, and the entire team of doctors and nurses involved in my prenatal care, the C-section, the resuscitation attempts, and our hospital stay attended the service.  On Saturday, July 25, 2015, we laid him to rest in a beautiful cemetery, on a sunny, hot summer day.

**********

The events leading to Matthew’s death were rare – the doctors informed us they’d never before witnessed an umbilical cord accident death on a fetal heart rate monitor in real time.  They believed Matthew’s death resulted from an acute tightening of the knot in the cord, and they were unsure as to why he could not be resuscitated.

I blamed myself.  If I would have demanded a C-section just 30 minutes earlier, would he have lived?  And how could I have had five ultrasounds with maternal fetal medicine and been unaware of the existence of the true knot?  Had it been my responsibility to ask if they’d checked cord pathology?

We continued discussions with our doctors – they were as puzzled about Matthew’s death as we were.  They assured me it wasn’t my fault – they wouldn’t have performed a C-section at 33 weeks even if I’d made the demand.  And they told me cord pathology isn’t studied on ultrasound – it’s not part of the “standard of care” in the United States.

But we wanted to know more about Matthew’s death, so we connected with Dr. Jason Collins, MD, a renowned doctor from Louisiana, who’s devoted the last 25 years of his career to studying umbilical cord accidents.

Based on his review of Matthew’s fetal heart rate monitor strips, Dr. Collins believes sometime after I went to bed on Saturday, July 11, the knot tightened, sending Matthew into an intrauterine fetal coma, and not long after, he lost brain activity.

Somehow, his little heart kept beating for another day, despite no brain function, which explains no fetal movement and no response to stimuli.  Even if the resuscitation attempt had succeeded, tests likely would have shown no brain activity, and life support would have been discontinued.

Dr. Collins’ research is interesting.  He maintains cord pathology can be viewed on ultrasound and, if seen, additional monitoring (extra NSTs, BPPs, etc.) can be performed in hopes of identifying potential signs of distress, increasing the odds baby arrives safely.  His research is something I’ll hope to utilize during potential subsequent pregnancies.

Shortly after Matthew’s death, Mark joined the Board of the Star Legacy Foundation, whose mission is to increase awareness, support research, promote education, and encourage advocacy and family support regarding stillbirth.  Dr. Collins is a medical advisor to the Star Legacy Foundation – much of what Star Legacy Foundation does is support the research of those in the medical field trying to decrease the rate of occurrence of stillbirth, as well as empower women to advocate for what they feel is the best care, even if that level of care is above current United States standard of care.

Mark’s work with Star Legacy Foundation is just one of the many ways we hope to keep Matthew’s memory alive.

**********

Dear Matthew,

We love you so much, and we’ll never forget you.  In your short life, you’ve impacted us more than we could have ever imagined.  Our love for you is huge, so our grief is huge.  And you’re loved by so many.  In the days since you died, life has been so difficult.  But, we’ll make sure your impact on the world is big.  Robert Munsch, a baby loss dad and famous author, says it best…

We’ll love you forever,
we’ll like you for always,
as long as we’re living,
our baby you’ll be.

We’d have given anything to parent you Earth-side, and we’re sorry we couldn’t keep you safe.

Til we see you again,

Mom & Dad

You can email Christine at: chickydoodles2230@gmail.com

Christine blogs at: https://chickydoodles.wordpress.com/

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Comments

  1. Christine– So sorry for your loss. I lost my son in a very similar way just two months before you lost Matthew. I too wonder how this became my life. Thank you for mentioning the Star Legacy Foundation, I hadn’t heard of it before. And thank you for sharing your story.

    • Amanda – thanks so much for commenting. I am so very sorry for your loss too. It is just so unbelievable that a chain of events like this is even possible – just so tragic. What we really like about Star Legacy Foundation is that it’s one of the few organizations focused on promoting research and awareness. Many organizations focus on only grief and support, which is extremely important (and it’s part of Star Legacy’s mission too), but because so many of these types of deaths happen, I just think it’s extra important to promote and support those in the medical world committed to researching these issues – to maybe cut down on the number of tragedies. Did you by chance write your story anywhere? If so, I’d love to read it. Sending love and light your way,

      Christine

  2. Hi Christine,
    Your story was very moving to me and I wanted to thank you for sharing. I haven’t gotten around to writing mine yet, but we lost our angel baby Owen Nathaniel on 10/3/15 when I was 7 months pregnant. Our circumstance was similar in that I noticed his lack of activity one evening and went to the ER to check on his heart rate. However, there was no evidence of any medical issues with the cord other than a lack of blood flowing through it (but no knots). I am still baffled and in shock of what occurred, but I have to tell myself maybe there was something internally wrong with Owen that would have caused his passing eventually. We decided not to do an autopsy because of how perfect he was, so we will never truly know if that was the case. I will look into the organization you posted as well, we are going to participate in a March of Babies walk next year and are raising donations for that cause. Doing something to try to help others is the only thing that comforts me right now. Thank you again. Praying for you and your family.
    Warmly,
    Ana

    • Hi Ana,

      Thanks so much for commenting. I am so very sorry for your loss of baby Owen Nathaniel. I just love his name – it’s beautiful. It’s just so very heartbreaking and tragic – there are really no words. 10/3/2015 is still so fresh – it is just so hard to get through those earliest of days. It’s still very difficult for me, even this far out. Just be as gentle with yourself as possible during this time. If you decide to write your story (it took me like 3 months to have the strength to do it), I’d love to read it.

      I am thinking of you today, and little Owen, and I’m praying you and your family will find the strength necessary to make it through these darkest of days.

      Feel free to reach out to me via email any time.

      Sending so much love and light your way,

      Christine

  3. Hi Christine i am sorry for your lost. i was pregnant with twins-boy and girl. My son didnt make it. im in a country where the health care is not the best. Unlike you I did not even get to see him, touch him, hold him. i was deprived of seeing him. it has been 3years and i still cry- i still hurt. At the sametime im thankful i have my little girl she means the world to me. Thank you for sharing Christine

    • Hi Shanelle, Thanks for reading and for commenting. I’m so sorry for your loss of your sweet little boy. And I am so sorry you did not get to see him or spend time with him. I can only imagine how difficult that must have been and still is. I’m sure it will hurt forever. Your precious little boy felt your love and is with you always. Sending so much love and light to you, Christine

  4. Hi Christine,
    Thank you so very much for sharing your story. My husband and I lost our first born Scarlett, to a cord accident on August 18th of this year. Those first few weeks I felt so alone. I had never even heard of a cord accident before, ignorance is bliss, right? We are conditioned to believe that after 12 weeks we are in the clear-we will for sure have a healthy, living baby. The utter shock of a loss like yours and mine is unbearable at times. Like me, I’m sure you were prepared for Matthew’s arrival. From my hospital window I could see my car still parked in the same spot it had been in the morning of my horrendous 38 week check up. I looked out that window knowing that Scarlett’s carseat was strapped in and ready to bring her home safely, only she would never come home the way we thought she would. Her diaper bag was packed, my bag was packed, her dad’s bag was packed and her nursery was ready. Life is so cruel sometimes but connecting with people like yourself give me a glimmer of peace. Peace that I did everything I could possibly do to bring Scarlett safely into this world. Peace that this truly was an accident, not anything that I could have prevented or foreseen coming. I recently cracked open a fortune cookie and this is what it said, “Those who endure most are rewarded most”. God I hope this is true for you and me and the millions of other people who have experienced baby loss.
    Lot’s of love to you and to your husband during this trying time.
    Ashleigh

    • Hi Ashleigh, Thank you so much for reading and for commenting. I am so very sorry for your loss of your precious Scarlett (love her name by the way). It is just heart wrenching. And so especially tragic – the accident component of it. I have so much trouble with that. I tend to blame myself all the time, though I know intellectually it isn’t my fault. I, you, all of us, would have done ANYTHING we could to protect our precious babies. Life is just so freaking cruel sometimes – I think this type of situation one of the cruelest life has to offer, actually. I really hope your fortune cookie is true. It’s sometimes difficult to know whether to have hope for the future right now… I hope someday I, and you, can.

      Sending so much love right back to you. Feel free to reach out to me through email, my blog, or this website any time.

      Christine

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