In Memory of Sean -
A Story about Congenital Diaphragmatic Hernia (CDH)
by Susana Maria Rosende
TEARS IN HEAVEN
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 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 Lutz, 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.
With Brian and Joey at Brian's high school graduation in 2005 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 CHERUBS
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). Links for grieving parents In Memory of Avery Mae, a blog by her mother Lauren
In Memory of Garyn
This story follows the Breckenridge family's attempt at fetal surgery to save the life of their daughter, Garyn, diagnosed in utero with congenital diaphragmatic hernia.
In Memory of Allison
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. "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 About.com Continued When a Parent Loses a Child Unresolved Grief Helpful Books:
Empty ArmsThe 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 LutzCharities for Children: Hugs And Hope
Locks Of Love
Make A Wish Foundation
The Miracle Kids
Charities for Children:
Hugs And Hope
Locks Of Love
Make A Wish Foundation
The Miracle Kids
Children's Charities of America