Perinatal Hospice http://perinatalhospice.org
Hospice care serves patients of all ages…even those yet to be born.
Last year, Mary Gravina, a social worker at the nonprofit Hospice Care Network, received a call from a pregnant mother of three in Merrick. Donna Dobkowski told the social worker that she had been informed by her doctor that the fetus growing in her womb would not survive long after birth. The child was developing without kidneys, which is fatal.
Her doctor advised that she terminate the pregnancy at 14 weeks, when the abnormality was first noticed. She had her own plan.
Dobkowski wanted to give her child life, even if that meant only a few good minutes. She continued the pregnancy, despite the concern of her doctor and other doctors she saw for confirmation of her child's grave disease — Potter's syndrome.
During her sixth month of pregnancy, she was referred to Gravina at the care network, who helped her devise a birth plan for her child and her family. Gravina was invited into the labor and delivery suite when Jonathan Dobkowski was born in May.
After an emergency cesarean section, mother and father held their newborn son. The baby's first cries sounded normal, and the boy looked healthy. But his lungs were not fully developed because of the missing kidneys, and he died after an hour in his mother's arms.
But during that time, with Gravina at their side, the couple was able to name their baby, gaze into his eyes, hold him, baptize him, kiss him and introduce him to his three siblings. Gravina bought each of the children a camera to take pictures of their brother, whom they knew would soon die.
The couple took imprints of his hands and feet, and brought home from the hospital the cap he wore, his hospital booties, a lock of hair. "I have no regrets," the mother said. "Mary helped me organize everything, and I got to meet my child, my kids got to hold their brother, and we took home a lot of memories that we will always cherish."
Had she opted to terminate the pregnancy, she would have thought that she had lost a daughter, which is what her doctor said was the gender of the unborn child. "I am thankful he was born alive," she said. A week later, they had a full funeral and were able to mourn the loss of their child.
Gravina also runs the program for dying children. "There are many times that the parents hide the grim diagnosis from their children, and don't talk about what is really going on," she says. "Many families don't want to even use the word 'cancer' in front of their children."
In these cases, she said, "we try to get them to understand that their children do know what's going on, and it comes out in their play, and in their artwork." "It's so much easier to have the conversation now than pick up the pieces down the road," Gravina explained.
[Newsday,http://www.newsday.com/news/health/ny-hsside0106,0,1830268.st By Jamie Talan, 6Jan04]
HARD CASES
www.benotafraid.net
Benotafraid.net is an online outreach to parents who have received a poor or difficult prenatal diagnosis. The family stories, articles, and links within this site are presented as a resource for those who may have been asked to choose between terminating a pregnancy or continuing on despite the diagnosis. The benotafraid.net families faced the same decision and chose not to terminate. By sharing our experiences, we hope to offer encouragement to those who may be afraid to continue on.
~~~~~~~~~~~~
“Waiting with Gabriel: A Story of Cherishing a Baby’s Brief Life,” by Amy Kuebelbeck is a first-person account of continuing a pregnancy with a terminal diagnosis.
Many hospitals and pregnancy clinics are now recommending this book for patients in this situation, and it may be useful for physicians as well as for their patients. http://waitingwithgabriel.com
Perinatal Hospice.org http://perinatalhospice.org
Perinatal Hospice.org http://perinatalhospice.org
~~~~~~~~~~~
Troubling Pre-Natal Diagnosis?
Every year in the United States, approximately 133,000 pregnant mothers will walk into their doctors’ offices for a routine pre-natal test and walk out with a broken heart because they receive what is called “poor pre-natal diagnosis,” or PPD.
This means that their infant is afflicted with a chromosomal abnormality or a serious defect in a vital organ.
More than 90 percent of these pregnancies end in abortion.
There is a place where parents can receive emotional support and encouragement when they are confronted with a devastating diagnosis.
Like all human beings, these children are precious gifts, but any parent needs extra support, information, resources and encouragement in order to say “yes” to love in the face of fear and tremendous pressure to terminate. For mor
e information visit www.prenatalpartnersforlife.org or call (763) 772 – 3868.
~~~~~~~~~~~~~~
Another wonderful site for support is at www.livingwithtrisomy13.org
This is an amazing site where families, through their own grief and pain, reach out to help others who have had children with Trisomy 13.
All these families have lived and are living with a Trisomy 13 diagnosis and the reality of how it changes lives. With grace and hope they continue on and share what they have experienced.
[Vine & Branches, July 2007]
Rachel's Vineyard is on the web at: www.rachelsvineyard.org,
(877) HOPE-4-ME.
www.heavensgain.com
Each miscarried baby is a loss and each family grieves differently. Proper burial of our miscarried babies in a little casket was very important to us. Even after diligently searching, we were not able to find a little baby casket or tiny coffin for any of our miscarried babies. Heaven's Gain is our attempt to aid parents in finding a small baby caskets sized appropriately for their baby who died less than full term…We hope our tiny baby burial caskets and other miscarriage burial products will acknowledge and uphold the dignity of each miscarried baby and bring comfort and closure to each grieving mother, father, and family. [from this website]