One patient experienced spotting for three days before seeing her midwife who sent the patient to the hospital for a non-stress test. Although no contractions were evident, the patient was advised not to walk, not to drive, and to stay home from work. Her job involved driving from office to office, from DC to Reston and other places in metro area. The patient nevertheless went to work. She then suffered premature rupture of membranes and was hospitalized for two days. Preterm labor ensued, and the baby died of sepsis. The mother had severe chorioamnionitis. Although the mother was informed of the risk to the baby, she chose to not quit work. She stated she experienced a great deal of stress and tension from her work, but after she went on maternity leave they hired more people to do her job. This was her third miscarriage. She plans to quit work if she gets pregnant again

"When I think of the babies I just get angry with my physician. I kept telling him I had back pain and he just ignored me."

One patient recently emigrated from Ghana after waiting for 9 years to come to America. She was pregnant, and had serious Pregnancy Induced Hypertension which was diagnosed and treated in Ghana, before she boarded the plane for America. The baby died in utero. The mother delivered a macerated stillborn one week after arriving in America.

Trisomy 13 was diagnosed at about 20 weeks by ultrasound. The patient and her husband found the SOFT support group on the Internet. (Support Organization for trisomy 18, 13 and other related disorders) The patient felt she received good information, and she subsequently interviewed the neonatologist and social worker at Inova Fairfax Hospital for Children to discuss her options. The parents decided against an abortion and chose to go to term. When the mother went into labor, she said, "I knew it was time to meet her" The father baptized the baby, and they held her till she stopped breathing after about an hour. Funeral arrangements had already been made and the baby was cremated. They had private childbirth classes with another couple who had previously had a stillbirth, and offered to help other couples with trisomies deal with their pregnancies and births.

Some of this mother’s comments:

" I wished that the sonographers could have given me more information or showed me pictures of trisomy 13. I got that from the SOFT group on the internet. Also, I could hear them talking about us while I lay there"

"The nurses on the gyn floor need more training in caring for maternity patients. They did not massage my uterus or check me all night and I had to be catheterized in the morning."

" We wanted (our daughter) to be born in privacy and with dignity." The nurse in L&D did not know what trisomy 13 was, and the mother worried about how the nurse would handle the situation.

"This pregnancy was very hard, but it brought us and our families closer together. We appreciated our little girl and our lives much more. We learned that most things in life don’t really matter."

Several months later, another patient whose baby died of Trisomy 13 said:

"Every physician and nurse was very caring and sympathetic. We appreciated the L&D nurses for how they introduced the baby to us. The NICU nurses took pictures that look almost professional and a family friend has created a very sensitive display."

The patient was advised to have a fetal reduction from 5 fetuses to 3. She and her husband went to Jefferson Hospital in Philadelphia for this procedure, and told nobody in their families about it. It was a very difficult decision for them.

The pregnancy continued then normally, until 20 weeks. The mother worked as a math teacher. She was on her feet all the time at work, and could take no rest breaks. The mother tested positive for beta strep. At 20 weeks, she had signs of preterm labor, followed by a rapid labor and delivery. One baby was stillborn, and the other 2 died shortly after birth.

Some of the mother’s comments:

"The nurses urged us to hold the babies and we did. I am so glad that we did."

"Don’t put the patient whose baby has died on the floor with other women and babies."

"Be sure that bills that should not be sent to the family are not sent"

"Don’t give out mothers name and address to companies who solicit for baby items, insurance, etc.

"When my baby was dying they called me in my hospital room instead of calling my husband at home. I was sedated. I wish they had called him first."

A mother whose private obstetrician sent her to the perinatologists at Inova Fairfax Hospital because of the NICU there

" It would have been better if my doctor and the perinatologists talked to one another. They were not always in agreement and it was confusing for me. It would have helped if someone had sat with me to tell me what my husband was feeling and how to help him, and sat with him and told him what I was going through and how he could help me. It has only been this past month that we can talk about it (the baby’s death) together. This should occur while the mother is in the hospital and be repeated after 2 or 3 months."

1. "The first I knew something was wrong was when the transport nurse came in to tell me they were taking my baby to Fairfax Hospital. She explained everything to me. My husband followed them.

I thought the care I got at my hospital was excellent, but after I saw the kind of care they give at Fairfax Hospital I realized I would never go anywhere else. The pediatricians were wonderful. They explained everything to us. Even though my baby died, I would go back there for my next pregnancy. In fact, if we have another by, we will name him Steven Keller ____"

2. " It would have helped if the nurses and doctors communicated more, and showed their sorrow over the death of the baby. We needed help and advice in what to do about burying the baby."

3. "I wish that when I had my fetal echocardiogram that it had been done by a Pediatric Cardiac specialist. Then maybe they could have seen that there was a problem and when the baby was born we would have known why he was sick and they would not had to cause him unnecessary pain with the spinal tap."

"Everyone at Fairfax was very helpful and did what they could for us. The only person who was not helpful was the doctor at the military hospital. He was very cold and impersonal."

Our son came home with hospice care. Everyone was very professional. The hospice services and personnel were outstanding. The hospice helped us with therapeutic services such as counseling and Healing Touch. We will go back around the holidays because we know it will be a difficult time.

A Pakistani mother told us she had no one to talk to about the loss of her baby, who died of a congenital cardiac anomaly. The mother and her husband are first cousins, which is common in their culture. The mother said she could not discuss the loss of their baby with him because when she had his first miscarriage, he had a bad automobile accident and was out of work for 4 months. Her family expects her to accept the pregnancy losses as Allah's will.

" It would be good to have a doctor come to a group meeting and explain some of the reasons why babies die."

"Before she was born we worried about baby clothes and strollers and bassinets. We worried about which preschool she would attend, which high school and college. We worried about what it would be like if she got married and moved away from home. All this before we ever laid eyes on our beautiful daughter. We didn't know enough to worry about Newborn Screening. Our worries now are which funeral home to call, which cemetery to bury her in, which headstone to choose, and how to pick up the pieces of a broken heart."

"I can't really give you advice on what will help your friends though this tragedy because everyone is different.  What helps one person can be incredibly hurtful, irritating, or just plain irrelevant to another. I can only tell you what I have been doing to cope...

Having some sort of memorial service--whether it is through the hospital, a funeral home, or just something private--can be very comforting.  It is a chance to gather around your family and friends to say a proper goodbye to the baby.  It is a chance to express the thoughts and plans you had for the child, to acknowledge the effect this brief but precious life had on yours. If the hospital has some sort of service, as ours did, it can also be an opportunity to share your feelings about the loss with your obstetrician and other medical staff, and for them to do the same with you.

Some grief books I have found helpful include " A Broken Heart Still beats: After Your Child Dies" by Anne McCracken and Mary Semel, and "Unspeakable Losses: Healing from Miscarriage, Abortion and Other Pregnancy Loss" by Kim Kluger-Bell.  The first book is a collection of poems, journal entries, letters and  short stories from famous people who have lost children--mark Twain, Victor Hugo, Anne Morrow Lindbergh, Chekov, Robert Frost, Anne Rice, etc.  

The second is a narrative by a psychotherapist who herself had two ectopic pregnancies and six failed IVF procedures. She discusses some cases she has had with patients who have suffered pregnancy losses or gone though abortions and looks at the effects on women, men and  medical staff. There is an excellent list of support groups and supplemental reading material in he back of the book.  Both of these books can be ordered from www.borders.com  if you can't find them in local stores.

Other suggestions for ways to cope include planting a tree for the baby, buying a piece of jewelry as a memento to wear every day, setting up a little memorial in your room, or setting up a memorial fund with a hospital or charity.  Tell your friends to do whatever seems right to them.  Don't worry that any activity is weird or inappropriate, and don't censor feelings."