May 27, 1994 - June 2, 1994
Hypoplastic Left Heart Syndrome
I am so sorry that you have a
reason to read this letter, since it means that perhaps something
is terribly wrong with your baby. We found out when I was 20
weeks pregnant that our baby had Hypoplastic Left Heart Syndrome.
Never in our lives have we been faced with such painful
decisions. After a great deal of research and talking to doctors
and surgeons and other parents who had chosen all the different
options, we decided not to have our baby undergo surgery. Our
beautiful baby, Daniel, was born exactly five months later. He
lived for five precious days and died in our bedroom at home, in
our arms. 
Dear Parents,
The five months of "knowing" were not easy, yet I am forever thankful that I knew. The time I had allowed me to prepare so that we could enjoy each and every second we had with Daniel. Our time with him wasn't filled with that initial shock and devastation of finding out. We were filled with such joy and love. In a very bittersweet way, those days with Daniel were certainly the best in our lives; we were a complete family. Here are some things we did that you may or may not find useful:
Through meetings and
conversations with the neonatologist, my OB and the
pediatric cardiologist, we wrote up our "birth
plan." It included things like no routine shots or
baths or nursery stays. I wanted to spend 100% of the
time with Daniel. Instead of the warmers, we did
"kangaroo care" where the baby and mother are
skin-to-skin under blankets. I nursed Daniel for each day
of his life, and it is something so wonderful and special
that I'll never forget. The nurses took his footprints
and handprints for us. We wanted so badly to bring him
home while he was healthy that the doctors let me out of
the hospital less than 48 hours after my c-section. We had previously arranged for
hospice care. Hospice was very helpful because a nurse
came whenever we wanted to see how he was doing, and when
he did die, we didn't have to have the paramedics come or
bring him to the hospital. After Daniel died, my husband
and I gently bathed him and dressed him, and then we woke
up our older son and our parents who were there to help
us. We all said our goodbyes. The hospice nurse made all
the necessary calls for us.
It was very
difficult being pregnant and choosing a cemetery and a
funeral home, but we did it that way. I really didn't
want anyone to touch our baby but those of us who loved
him, so the funeral home agreed that we could carry him
there ourselves. We laid him in his tiny casket on top of
a blanket I had knitted for him. His brother put in a
little Tigger and his Daddy put in a letter he had
written to him. We all kissed him goodbye and then we
sealed the casket forever.
There are things
I wish we had thought of like having my husband carry the
casket after the funeral to the grave, but they never
asked us, and we didn't think of it until later. Also, I
wish we hadn't been whisked away after the funeral - I
should've stayed to see him buried. It hurts me to think
that no one was there that loved him.
Some things I'm
glad we did were plaster of paris footprints. We have my
handprints from when I was little and my older son's and
now we have Daniel's footprints. We took lots of pictures
and videotape, but there's never enough. Consider having
a professional come in to take pictures. If you have
other children, let them hold the baby too and take lots
of pictures of that. They are priceless. Take pictures of
your baby's hands and feet - back and front. There are so
many little details that are hard to remember later.
Smell your baby . . . feel his or her breath in your ear.
I don't cry so often
anymore, but I am now . . . I cry for my baby, for your baby and
for all the babies who will never grow up. If you would like to
talk or write, I am here for you. Again, I am so, so sorry about
your baby.
Love,
Kim Hazlett
