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
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
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
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
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
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
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
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.
from her mother Dawn's
- 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