Star Legacy Foundation

Blog - Stillbirth Matters

A father’s advocacy never ends.

June 7, 2016


by Dale Fuller, Star Legacy Foundation Board Member

I hope Landon is proud of me today.

This year I’m celebrating Father’s Day with an empty highchair at our dinner table.  Two years ago we lost our son Landon to stillbirth at 38 weeks gestation, just a few days before his due date. 2015-06-18-1434648618-2834579-IMG_0719copy.jpg

I had grown up believing Father’s Day was about honoring your father, which I still do, but it’s taken a different meaning for me now, wanting to advocate for my children in a way I had never planned.

My story begins much like any other excited couple expecting a new baby.  My wife Carrie was 38 weeks pregnant with our second child.  We had already been blessed with a healthy daughter Elise two years prior.

Carrie’s pregnancy was “text book.”  Other than mildly high blood pressure everything was going perfect and in just a few days we would be expecting our son.  I still remember the morning of Thursday, May 15, 2014. I kissed Carrie goodbye on my way to work and put the baby’s car seat in my vehicle, eagerly awaiting his arrival.  I had waited to do this until his due date was closer, but I felt confident the time was right, just in case he came early.  Carrie was on her way to her last ultrasound appointment that morning.

My life changed forever that day.

During Carrie’s last, routine ultrasound the technician could not find the baby’s heartbeat. He was gone.  I rushed to the clinic to find Carrie leaning over a chair in a back room.  She was in shock.  I asked the doctor “how could this happen?”  The doctor shrugged her shoulders and said, “It happens.”  I was speechless.  I prayed Carrie would feel the baby move, and for this all be some horrible mistake.  Unfortunately that didn’t happen.  We were told to go home and come back the next day to deliver our baby.

One of the most exciting times in our lives had turned into a nightmare.2015-06-18-1434648739-4006315-IMG_0778copy.jpg

The next day we delivered our sleeping son Landon.  A perfect baby boy almost 8 lbs.  We were given 36 hours to make a lifetime of memories by taking photos, his hand-prints, locks of his hair, and introducing him to his big sister.

After a million “whys,” the doctor informed us that Landon had a “true knot” in his umbilical cord which had become too tight and caused him to pass away.  I immediately thought, “How could this have been missed after weekly ultrasounds for six weeks?”

The following week we buried our precious son. It was a bright sunny day with the flowers in bloom.  Surrounded by family and friends we said goodbye to the boy we all wanted to know.

After the funeral, Carrie and I started the quest for answers.  We sent her medical records to a well -known doctor who has dedicated his life to reducing stillbirth and studying the human umbilical cord (Dr. Jason Collins).  Shock struck again after finding that Landon’s cord knot was actually visible in some of Carrie’s ultra sound pictures. How could this have been overlooked?  We never got the answers we asked for, but have turned our passion for answers into advocacy.  This started a new journey in our lives.  It was time for me to advocate for my child.

2015-06-18-1434648813-3524894-IMG_2884.JPGShortly after Landon’s passing I joined the Star Legacy Foundation  whose mission it is to reduce the number of stillbirths and change society’s thinking about them.

Stillbirth is a public health crisis.  Every year in the United States approximately 26,000 children die from stillbirth, more than S.I.D.S. and childhood cancer combined, yet little to no funding or research goes towards this cause.  How can society be forgetting about these children who were so close to greeting their parents with a healthy cry? Unfortunately the medical community has been less than open to change, and interestingly comfortable with the number of stillbirths based on current data.  My son seems to be a “statistic” that is accepted by the medical community.

So we began contacting state health agencies and ACOG (American College of Obstetrics) asking them to use today’s technology more effectively to watch for warning signs of fetal distress and to identify ticking time bombs.  I’m not a doctor, but often wonder how they are able to perform such complex procedures like heart or microscopic surgery, but yet they say it’s not possible or necessary to detect a knot in an umbilical cord.  I’ve asked the medical community these questions.  One doctor told me that they “just don’t want to scare pregnant mothers.”  That is a poor response to a “stillbirth dad,” to which I’m now referred.

Additionally, there should be more awareness and education for expecting mothers about tracking fetal movements and what are the warning signs of fetal distress.  Reputable organizations across the nation such as The Star Legacy Foundation have material on how to do this.  Why were we not educated about this from our “trusted” medical provider?

We have already had success in this journey, however. In my home state of Minnesota, our lawmakers are listening and this last year passed into law a bill encouraging the Minnesota Department of Health to begin researching the causes of stillbirth and to start drafting recommendations to reduce these tragedies.   This year we were successful in convincing Minnesota lawmakers to provide a $2000 one-time tax credit for stillbirth families to offset the unexpected expenses when a baby is stillborn.  I am hopeful this is a movement for other states and for action at the federal level.

On this Father’s Day life has gotten easier.  A few months after losing Landon, my wife and I found out we were expecting another child.  How happy, but scared we were.  I prayed every night that history would not repeat itself.  Carrie and I began the search for a doctor who would advocate for us. After seven interviews (and some persuasion) we found one!  We had ultrasounds twice a week and looked at the umbilical cord in depth at every appointment.  In May 2015 we welcomed home a healthy son, Lukas. “Bittersweet” is the word I use to describe the experience.2015-06-18-1434648954-1719437-P7.jpg

Looking back over the past two years, Carrie still asks me “why did this happen to Landon?” and “what could we have done differently?”  The answer I give her is that we did the best we could with the information we knew at the time. As a father, I have to believe this.

I hope Landon is proud of me this Father’s Day.  It’s been two years now since I held him last, but I can still smell his baby smell, I can still feel the weight of his body in my arms, and can still picture his beautiful hands and toes. I will continue to remind my living children about who he was, and what took him from us.

I would ask all fathers across the country to take a moment to honor their children and to think about how they are advocating for them.  They need you more than you know, and the moments you get with them are limited.

Landon, as long as I still have a heartbeat, I’ll go on advocating for you and for the all the other babies lost to stillbirth.

I love you,

Dad


A father’s advocacy never ends.

7 Comments

  1. Sherry Reese says:

    What a beautiful example you are setting as a dad, both of a little angel and living children! Thank you so much for the work you are doing to bring awareness to other parents and to the healthcare industry in this country. My husband and I suffered a similar loss of our third child who was our first daughter after two healthy sons. She passed at 40 weeks 6 days during labor. I was laboring at home and by the time we arrived at the hospital, she had passed. At delivery, her cord presented in front of her head and the only “cause” was that her cord appeared to be compressed from the stress of labor contractions and my daughter’s full term size. If I had been laboring in the hospital with monitors, the distress would have been detected and she likely would have been saved by emergency c-section. I blamed myself for the longest time, but then I had so many questions. After two perfectly healthy pregnancies and late post-term deliveries (my babies like to stay in), why had no doctors ever even addressed the risks of late term cord accidents? Like you said, they “don’t want to scare mothers.” What a lame excuse! I am positive they could have detected a cord danger from our late ultrasounds showing a cord that was very low in the birth canal. Our daughter was a healthy 8 lbs. We have since had our “rainbow” baby, another boy, who has brought so much joy back to our lives, but we will never be able to replace what we lost. Every birthday, every holiday, every first day of school that is missed will forever remind us of what we are missing. Thank you for sharing your story and your heart with the world and for fighting for our little ones! God bless you and your beautiful family!

    1. Dale Fuller says:

      Thanks Sherry for you comments and I’m so very sorry for the death of your precious daughter.
      Keep up the fight in her memory to change things.

  2. Julia says:

    Dear Dale,
    I am living in Germany and my little boy also died because of an umbilical cord knot, which wasn’t seen. My prenatal doctor, who looks with a very good ultrasound at the baby, said, that looking at the umbilical cord is not in his regime. Do you have the email Adress of Dr.Collins, or do you know of any specialist Germany?
    Thank you
    Julia

  3. Jan says:

    I am the grandmother of little Brooklyn Grace Adamson, who was laid to rest on February 28, 2017. I have to find a way to channel this grief. I live in Texas and I find that there is no Star Legacy Foundation Chapter in Texas. Where should I begin by helping to make a difference in my state with regard to stillborn births?

    1. admslf says:

      I am so sorry for the loss of your sweet granddaughter Brooklyn. We would love to talk to you about getting some additional activity in Texas. Please contact me at shauna@starlegacyfoundation.org or call 952-715-7731 and we can chat more. Wishing you hope and healing

  4. Chris cuen says:

    What amazing story
    made me go back 20 years ago when my gift from God, My little Kelsie Leona Cuen stillborn
    no day go by without thinking of her.
    all my dreams, my plans for the future, my relationship with my wife come down in a blink.
    how you need to be the strong one to give the support to your wife, we need to cope together,we need to talk.
    God was and still our strength to keep going.
    Now, 12 years ago we adopted a beautiful baby and she is the motor in our lives.
    She was promoted to 8th grade with high honors so proud of her she is into sports soccer and softball.
    god bless you and thanks for sharing your story

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