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Wednesday, October 1, 2008

My article for Pregnancy and Infant Loss Awareness Month

October has been designated as Pregnancy and Infant Loss Awareness Month. I think this topic deserves a lot of attention, so women don't have to feel as though they are members of a secret society. So, I wrote an article giving details and information about loss. I may also do a sidebar for those who have a loved one who has lost a child and want to know what to do and what not to do. In this article, I detail that Oct. 15 is Pregnancy and Infant Loss Awareness Day. Everyone is encouraged to light a candle that day for the babies that have died. If you've lost a baby of your own, please do it to remember that child. If you haven't, please do it for my Jenna and all the other lost babies, too. Here is the article.

October has been designated as Pregnancy and Infant Loss Awareness Month with Oct. 15 set aside as a special remembrance day.

Every year, there are approximately six million pregnancies throughout the United States, which result in 4,058,000 live births. Pregnancies that end in a loss number 1,995,840.

To break the numbers down even farther, 600,000 women experience pregnancy loss through a miscarriage, which is considered any loss that occurs before 20 weeks gestation.
The loss through termination equals 1,200,000, and 64,000 women experience an ectopic pregnancy loss. Molar pregnancy losses equal 6,000 with 26,000 women experiencing a stillbirth, which is any birth after 20 weeks of gestation.

Most early miscarriages, as many of 60 percent of first trimester ones, will remain unexplained. It is usually assumed these losses are genetic, where the chromosomes didn’t replicate correctly. Other reasons can include hormonal problems; chromosomal defects such as Triploidy and Trisomy 13, 18 and 21; problems with the uterus or cervix; immune disorders; premature rupture of membranes and blighted ovum, ectopic pregnancies and molar pregnancies.

A blighted ovum is a condition where a gestational sac grows, and a woman develops all of the pregnancy symptoms but no baby ever forms. An ectopic pregnancy is a normal fertilized egg that gets stuck in the fallopian tube and implants there. This type of pregnancy can not survive and puts the mother at risk for severe hemorrhaging and possible even death as the baby grows and eventually bursts the tube.

A molar pregnancy is a very rare type of pregnancy where an abnormal mass forms inside the uterus after the egg is fertilized. A molar pregnancy is formed when a sperm fertilizes an empty egg (called a complete molar pregnancy) or when two sperm fertilize one egg and both the baby grows a little as well as the abnormal placenta, called a partial molar pregnancy. Even when a baby grows, it cannot survive.

If a molar pregnancy has been diagnosed, the mother’s health will be carefully monitored. In about 15 percent of molar pregnancies, the moles spread to other parts of the body like cancer. A mild form of chemotherapy will have to be used, but the cure rate for this disease is very high.
Trisomy 13, 18 and 21 are chromosomal disorders, where the baby has three copies of a certain chromosome instead of just two. Trisomy 21, the most common of the trisomies, is also called Down Syndrome. Triploidy is another chromosomal disorder where the baby has three complete sets of chromosomes instead of just two. Triploidy and Trisomy 18 are considered incompatible with life and are always fatal. Some babies with these disorders are carried to term, but most result in either an early pregnancy loss or a stillbirth.

A stillbirth is technically any pregnancy that ends after the 20th week, and the baby does not survive. Some babies die in utero and are discovered when a heartbeat is not found. The most common causes of this are uterine abnormalities, a knot or other umbilical cord accident, infections of the lining of the gestational sac or cord and placental abruptions that cause the placenta to pull away from the uterine wall.

Other babies are lost through early labor. The causes of early labor are premature rupture of membranes, uterine abnormalities that make the uterus to small to hold the baby and an incompetent cervix. Some babies are lost during labor and delivery by an umbilical cord that gets pinched between the baby’s head and the cervix or the cord wraps around the baby’s neck.

Having a miscarriage or stillbirth is very difficult. The emotional impact usually takes longer to heal than the physical one. Some emotional symptoms mothers and fathers may experience include numbness, disbelief, anger, guilt, sadness, depression and difficulty concentrating. Some women report having a feeling of empty arms. Physical symptoms can include fatigue, trouble sleeping, difficulty concentrating, loss of appetite and frequent episodes of crying. Seeing a counselor can help with these symptoms.

If you have experienced a miscarriage, stillbirth or infant loss, know that grieving is a normal thing after experiencing this. Some women find comfort in doing things of remembrance, including planting a tree, selecting a special piece of jewelry with a birthstone or donating to a charity.

Pregnancy and Infant Loss Awareness Day on Oct. 15 was started by Robyn Bear after she had six miscarriages with little or no support. She wanted a day set aside for parents, grandparents, siblings, friends and the world to unite and remember the babies that had been lost.

On Oct. 15 everyone around the world is urged to light a candle at 7 p.m., in that time zone. If everyone lights a candle Oct. 15 at 7 p.m., and keeps it burning for one hour, there will be a continuous wave of light over the entire world in memory of all the babies who have been lost to miscarriage, stillbirth and infant death.

For more information, visit the Web site at


ThereseAnn said...

My heart goes out to all women who've suffered the loss of a much wanted child.

I have had seven pregnancies. 3 miscarriages all at about 10-12 weeks. My last pregnancy was at age 40 and at birth surprised us with her genetic profile of trisomy 13.

You state in your last entry:
Triploidy and Trisomy 13 and 18 are considered incompatible with life and are always fatal. Some babies with these disorders are carried to term, but most result in either an early pregnancy loss or a stillbirth.

There are many of us out in Trisomy Support "world" trying to help update the outdated statistics. Not all trisomy 13's are incompatible with life, my child with Full trisomy 13 ( tested twice) is now 8 yrs old. She's has medical intervention, we've fixed what we could and she is the most unique and special kid ever... I really can't imagine not having this package of "love and joy" in our lives.

Just last night I sent this to another blog so will offer the same reply to save some time... our little angel will be getting off the bus soon.

Your course info states:
Q: In regards to the lecture on the Origin of Mutations you say that monosomy is always lethal and that trisomy can only be observed for chromosomes 13, 18 and 21, and then it says that tri-and tetraploidy are always lethal

YIKES!!!! Correction... Argh!.. that outdated material!!!!
NOT all Trisomy's are lethal... There are many survivors...
Some of the full trisomy 13's have very serious abnormalities and their life is to be very short... but my child is full trisomy 13, Tested TWICE!! AT birth and at 2 years... and she is still alive... at age 8. Yes, her life might be short... but what a JOY we would have missed out on if we did nothing to help at birth.... We take one day at a time. She's extra work, yes, but so very loved..and she loves us in return...she is very AWARE.

She was born with many abnormalities...
small ASD, VSD, both closed on their own by 2 yrs.
Bi-lateral cataracts.. removed at 11 wks.. and in glasses presently.
at 6 weeks, complete malrotation repair, g-tube insertion and umbilical hernia repair.
Later, cleft lip, palate, ear tubes, fundo repairs...

She came through all the procedures/surgeries beautifully. She is a happy child. With a very sweet demeanor. If ever in pain, gas etc.. We deal with it.. Meds etc... She has a good life and is a blessing to our family.
Check out the videos off her page.

In most cases these trisomy 13 children can be brought to term, loved and cared for if even briefly...Some are still birth, but most do reach their parents arms alive. In a recent LWT13 survey (which will be on our site very soon) Our Treasured Memory Families were asked: if they were to have another trisomy child, knowing it would die would they do it again...over 98% said they would... And to balance that a survey in the book "Forbidden Grief" for mothers who terminated their pregnancies, 94% said they regretted their termination. Bringing to term, or attempting to is the most loving and compassionate direction we can go with these families, for those that want to meet their child....Giving them all the information and support so they know whats before them. There are many options.
To Carry to term or to induce/terminate
To Hospice/Palliative care or to medically treat...Many of our families just hold their children and create memories although very brief.

There are more survivors, but here are 84 living survivor stories

The Living with trisomy 13 site has many resources and also a full page of professional articles.

Even the National Library of Medicine has adjusted their treatment for trisomy 13
"Medical management of children with Trisomy 13 is planned on a case-by-case basis and depends on the individual circumstances of the patient."

You are welcome to use our LWT13 site for your Trisomy educational purposes. It really is one of the best trisomy 13 resources out there to date... :)
There is also many other wonderful support resources for Trisomy 18 and other related numbers... via the SOFT USA site... They have a yearly convention

Thank you for your time, and I ask you to please tell any future Doctors/medical professionals that we love these very special kids and they are each as unique as you and I... When they become physicians please work with the parents... help them to fully understand what is before them, as well as the resources available so they can make the best decisions for their child and their family.

Actually there is a new law... :)

Thanks for passing on the good news

ThereseAnn Siegle
Site Facilitator
Living with Trisomy 13

Jessica said...

I think it's great that you are writing this article. I hope it brings awareness to all who read it!