In Memory of Sean - A Story about Congenital Diaphragmatic Hernia (CDH)

In Memory of Sean -
A Story about Congenital Diaphragmatic Hernia (CDH)

by Susana Maria Rosende


<bgsound src="tearsinheaven.mid" /> Eric Clapton wrote "Tears in Heaven" after the loss of his five-year-old son. Please click button to start and stop this beautiful piece of music.
Eric Clapton
(Eric Clapton & Will Jennings)

Would you know my name if I saw you in heaven?
Would you feel the same if I saw you in heaven?
I must be strong and carry on
'Cause I know I don't belong here in heaven

Would you hold my hand if I saw you in heaven?
Would you help me stand if I saw you in heaven?
I'll find my way through night and day
'Cause I know I just can't stay here in heaven

Time can bring you down
Time can bend your knees
Time can break your heart
Have you begging please

Beyond the door there's peace I'm sure
And I know there'll be no more tears in heaven

Would you know my name if I saw you in heaven?
Would you feel the same if I saw you in heaven?
I must be strong and carry on
'Cause I know I don't belong here in heaven

April is your month. The 29th, your day. Every year I sing "Happy Birthday." I hope that somehow you can hear me and know you're not forgotten.

Today is your birthday. You would have been 15.

And I wonder, if you'd lived, how would you be? Would you be a thinker like your older brother, Brian, whose insight into people and relationships rivals that of Drs. Phil or Joyce Brothers? Or would you be like little Joey, a doer, with an uncanny ability to fix anything mechanical?

Which one of our dogs would you have claimed? Brian favors Brandy, our sweet and gentle Shih Tzu, while Joey's favorites are the energetic, timid Einstein and the giant Angel.

When would you have stopped calling me Mommy, and begun to call me Mom? When would you have lost your first tooth or training wheels off your bike? How would you have felt about No Nonsense Teacher, Mrs. Bayley? Would you have started shaving at 12, like Brian, whose 5 o'clock shadow fools people into thinking he's in his twenties instead of just a kid in high school?

I also wonder...Would you have been one of the luckier survivors of your birth defect? Or would you have needed Oxygen and a feeding tube? Would you have been on the Honor Roll, like your brothers, or would those precious minutes you couldn't breathe have resulted in your being learning-disabled?

All I know is no matter what, I would have loved you. I love you, still, after knowing you for those nine months, and the 15 hours you lived outside my person.

In Heaven, do babies STAY babies? For that is how I remember you and always will. My newborn baby, Sean, forever my baby.

April is your month. I'll remember you always.

"In Memory of Sean" by Susana Maria Rosende

My son, Sean Matthew, was born on April 29th, 1988 in St. Peter's Hospital, New Brunswick, NJ. When Sean couldn't breathe on his own, X-rays revealed he had Congenital Diaphragmatic Hernia (CDH).

Sean survived the surgery that repaired the hole in his diaphragm. The plan was for him to be flown out-of-state to Pittsburgh's Children's Hospital, and be placed on the only available lung bypass machine.

Sean never made it to the Pittsburgh Airport. He died during the flight, having lived only 15 hours.

Though his life on earth was short, and I was permitted to hold him for just a few seconds before he was rushed off to surgery, Sean has had a profound affect on my life and that of his brothers. I will always love and miss Sean. He is in my heart, forever.

Nine months pregnant with Sean

At nine months pregnant, I was looking forward to bringing my second little boy home. My first born, Brian, was 18 months old. My then-husband, Michael, and I had recently purchased a real bed for Brian, leaving his crib for the new baby. Since we knew that I was once again pregnant with a boy, we picked a boy's name right away, and always referred to the baby as Sean. Ironically, the ultrasound revealed the sex of our child, but not the birth defect.

Brian, at 18 months, with Mommy

Preparing for a life with two little boys, we painted their room blue and decorated it with Disney characters. We dreamed of our lives as a family of four, with two little boys growing up together, both in Little League, going to school together, double dating, being best friends.

Our dream shattered in pieces, with the shock of Sean's birth defect and death, and culminated in the breakup of our marriage and family.

April 29th, 2003 is the 15th anniversary of Sean's birthday. His big brother, Brian, is 16 1/2, plays guitar, and attends his high school's International Baccalaureate (IB) program, a rigorous, college prep curriculum recognized by colleges and universities in more than 70 countries! Despite his heavy homework schedule, Brian is also the family's standup comedian, musician, and artist.

With Brian and Joey, 1994

Five years after Sean, there is another brother, Joey. Joey is in 4th grade and almost 10 years old. Intelligent, mischievous and always on the go, lovingly dubbed "Dennis the Menace" by family and friends, Joey takes everything apart to "see how it works," enjoys anything to do with computers, and doesn't let his Asthma get in the way. He dreams of being an Inventor.

With Brian, 16, and Joey, nine in 2002.
Sean would have been 14.

I have a full life as a single, working Mom to Brian and Joey, but I'll never forget my second-born, Sean. I wonder what Sean's dreams and talents would have been, and I regret that I hardly had a chance to hold and kiss him, and never helped him with his homework, or even scolded him for teasing his little brother or missing curfew.

When I say I have two boys, I always think three. In my heart, I love Sean as much as I love his brothers. I will always miss him.

My son, Sean Matthew Lutz, April 29-30, 1988

For more information about Congenital Diaphragmatic Hernia (CDH) or parent support sites, see:

  • "What is CDH?" medical responses
  • Q&A for parents of diagnosed infants
  • CDH Research
  • Austin's Story: Pictures help family cope as baby beats odds

    Kenny Anderson, 3, has a kiss for his brother, Austin, who is being called a miracle baby by doctors at Akron Childrens Hospital. The youngest son of Ken and Angie Anderson of Perry Township was given a 5 percent chance of living when doctors learned 18 weeks into the pregnancy that he had a hole in his diaphragm and that nearly all of his organs were in his upper chest, a condition called Congenital Diaphragmatic Hernia.

  • Three-year-old Shane Shannon, A Survivor
    Association of Congenital Diaphragmatic Hernia Research, Advocacy, and Support.
  • Improved Survival With or Without Fetal Surgery
    A November, 2003 report of findings from UCFS clinical trials comparing fetal surgery with postnatal care for severe CDH.
  • Real Hope for CDH
    Kays' Kids is a network of parents to children born with cdh who opted for treatment/surgery at SHANDS in Florida with pediatric surgeon Dr. David Kays. The original Kays' Kids site has been updated and is now known as "Real Hope for CDH".

    Please visit the site to hear a Florida NPR report featuring information about cdh, Dr Kays, and the Kays' Kids support group!
  • The Fetal Treatment Center (TFTC) at the University of California, San Francisco (UCSF) with an overview of treatment, new research, and links for Congenital Diaphragmatic Hernia (CDH).
  • A Purple Bow for Sarah...In the Beginning

    Sarah's History

    Welcome to Holland - by Emily Pearl Kingsley

    I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

    When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

    After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

    "Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

    But there's been a change in the flight plan. They've landed in Holland and there you must stay.

    The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

    So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

    It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

    But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

    And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

    But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

    "Sarah Today" from her mother Dawn's Blog
  • A Family's Choice

    This series follows the Breckenridge family's decision to attempt fetal surgery to save the life of their daughter, Garyn, diagnosed in utero with congenital diaphragmatic hernia.
  • Allison's Story

    A father shares his family's experience beginning from the prenatal diagnosis of his daughter's cdh and documenting the ups and downs of her medical treatments after birth.
  • In Memory of Avery

    Avery's Mom Lauren Shares
    Support Groups, Good Causes and Donations:

The staff at SickKids hospital in Toronto was amazing to Avery and to our family throughout her whole life. Any donation would be so greatly appreciated for all that they did for us.
Connor is an angel who was born with CDH and lived for only 14 hours. Every year on his birthday, May 15th, his family donates books to Scottish Rite Hospital in Texas. Please help them help others.
This is an online support group for parents with children affected by Congenital Diaphragmatic Hernia. Members include parents of angels, as well as survivors. I couldn't have made it through Avery's life or now, without their support.
Have a video created just for you using your pictures and memories. All we ask for is a donation of any amount to Avery's Angels, which will go towards research to help find a cure for CDH.
Baby Audrey was born May 4th, 2006. Read about her journey here!
Catherine delivered Baby Sofia on April 18th, 2006. Read about their journey here!
Baby Jackson was born on March 5th, 2006. Read about his fight here!
Read about Sheri and her son Jaxtyn, a CDH survivor born on June 15th, 2005!
Theresa is a CDH survivor born on January 11th, 2005. Read about her experience and see great pictures here!
Jacob Owain is a CDH survivor. This brand new blog will show the happiness and also the struggles that CDH families face.
Patrick was born with undiagnosed CDH on September 21, 2001. After spending a month in the NICU, he is doing well today!
Leah was born on August 11th, 2005. She is a CDH survivor. Read her story here!
Kylie was born with CDH in early 2004 and spent 5 and a half months in the hospital. Read about her journey and the life of this active 2 year old here!
Julia was born on June 2nd, 2006. Keep updated on her fight with CDH here!
Baby Gabby was born March 19th, 2005. Visit her care page with the user name GabriellaHope to see this beautiful little girl and read about her fight!
Read about my daughter, Avery Mae Ziebart. She was born with CDH on March 17th, 2006 and became an angel in Heaven on April 3rd, 2006.
Drew was born with CDH on March 8th, 2006 and passed away on April 16th, 2006.
Sarah Christina is a CDH angel. Sarah's mommy had fetal surgery.
Alex was born in Australia on February 7, 2006 and lived until February 27, 2006. He is proof that CDH affects those all over the world.
Parker was due on June 20, 2006 but was born May 7th, 2006. She passed away May 8th, 2006.
Madeline is a CDH angel. Her mommy just made her a brand-new webpage!
Bryce was born with CDH on October 15th, 2004 and passed away on October 19th, 2004. Read about his life here.
Aiden was born on October 9th, 2005 and went to Heaven on November 16th, 2005.
Zach is a CDH angel born on November 4, 2004. He passed away on December 11, 2004.
Baby JJ was born on May 17th, 2006 and passed away at 18 days old on June 4th, 2006.
Dakota was born and passed away on May 8th, 2006.
Madison Lillian was born on May 24th, 2001 with CDH and passed away 2 hours later in her Daddy's arms.
Baby Mert was born in Turkey on July 11th, 2006 and passed away on July 14th, 2006. Meet his family and read about this beautiful baby's life here.
Baby Joseph was born on August 25th, 2006 and passed away one hour later on August 25th, 2006.
Mathias was born December 14th, 1998 and passed away from CDH on January 27th, 1999.
Read about Cecilia's battle with CDH.
Baby Judah was born with CDH on June 27th, 2006. He passed away on July 12th, 2006.
Gregory was born on August 3rd, 2004. He lived for 6 and a half months before CDH took his precious life on February 13th, 2005.

  • Links for grieving parents
  • "Death in the Family" by Michael Anderson
  • "Why?" Article 3, SANDS Inc. Newsletter
  • Needs of Bereaved Parents, SANDS Inc. Newsletter
  • SANDS - Stillbirth and Neonatal Death Society
  • Father's Grief
  • Mother's Grief
  • "Differences: Men & Women Facing Infertility or Bereavement
  • How Parents Grieve
  • Marriage Survival After Losing a Baby
  • Pregnancy and Infant Loss and the effect on the Marriage Relationship
  • The Unthinkable Grief: Marriages Can Survive the Death of a Child
  • "The Family Man" by Susana Rosende
  • "The Beginning of the End" by Susana Rosende

  • "A Free Man" by Susana Rosende
  • Unspeakable Losses (Why don't Americans talk about their lost pregnancies?) by Dayna Macy at Continued

  • When a Parent Loses a Child
  • Unresolved Grief
  • Helpful Books:

    Empty Arms

  • The Worse Loss

    The Bereaved Parent

    When the Bough Breaks

  • Getting through Mother's Day
  • Memorializing the Baby
  • How to Help Families Grieve

  • Resources from the March of Dimes

  • Donate to the March of Dimes in memory of Sean Matthew Lutz

    March of Dimes WalkAmerica to save our babies

  • Charities for Children:

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