Hope Angel: Information & Links
Folic Acid is required for the production of DNA, which is necessary for the rapid cell growth needed to make fetal tissues and organs early in pregnancy. Within the first 30 days of development the Neural Tube forms in the developing baby and then closes. The Neural Tube later becomes the baby’s spinal cord, spine, brain, and skull. Folic Acid reduces the risk of some Neural Tube Defects.

Side Bar:
New Studies also suggest that inadequate supplies of Folic Acid in the body are thought to contribute to Cleft Palate, Colon Cancer and Alzheimer's.

Daily Vitamins To be honest, taking vitamins just seemed to be a normal part of planning a pregnancy. So, when we decided to begin a family, I began taking a Daily Multi-Vitamin with 400 mcg of Folic Acid. At the time, I only knew that my Doctor and friends said "Take your vitamins". After this site was first published, I found out my friends did not even know how important Folic Acid was. So I went to the store to choose a daily vitamin. I purchased “One a Day Women’s” with 250 tablets for approximately a $15.00. Each pill costs .06 cents a day x 365 days a year = $21.60 a year. In retrospect, I later found out... .06 cents a day is a Bargain for the job it does!!! Folic Acid = PRICELESS!

Why? Statistics prove, HALF of all pregnancies are unplanned. Married or Single is not the debate here. Unplanned is Unplanned. Regardless of your birth control... be sure to get your daily requirements of Folic Acid. You know, as healthy as you eat, you may not be eating your daily requirement of Folic Acid. More importantly, You may not even suspect you are pregnant until you miss a menstrual cycle, which is usually 30 days. If you wait to take a Daily Vitamin with Folic Acid, until you know you are pregnant, you may not be able to protect your child from Open Neural Tube Defects. I remember asking my girlfriends, with kids, about testing for birth defects, specifically Open Neural Tube Defects. But, I still had no “true” concept of what they were. So I went to my computer and “Google”. This is what I Learned...

Neural Tube Defects occur when the Neural Tube fails to close properly, leaving the developing brain or spinal cord exposed.
  • NTD's are one of the most common birth defects
  • Occurring in approximately 1:1000 live births in the US
  • 95% of NTD's occur in women with no personal or family history
  • Common Neural Tube Defects, NTD's: Spina Bifida & Anencephaly

Spina Bifida occurs when the lower end of the neural tube fails to close. Thus, the spinal cord and back bones do not develop properly. Sometimes, a sac of fluid protrudes through an opening in the back, and a portion of the spinal cord is often contained in this sac. Paralysis of the infants legs, loss of bowel and bladder control, and learning disabilities are among the disabilities associated with Spina Bifida. Eighty to ninety percent of infants born with Spina Bifida live. AND... Despite varying degrees of disability, many lead successful and productive lives.

WARNING: Graphic Pictures of Spina Bifida.
DO NOT click on this link unless you are prepared.
Images of Spina Bifida  

Anencephaly (AN-en-SEF-uh-lee) occurs when the upper end of the neural tube fails to close. Causing the brain, and therefore, the top portion of the infants head to never completely develop or is totally absent. Anencephaly babies have a short life expectancy outside the womb, and no longer than a few days after birth.

WARNING: Graphic Pictures of Anencephaly.
DO NOT click on this link unless you are prepared.
Images of Anencephaly
SCREENING TESTS
Official Web Site - Potter's Syndrome Web Site
Forum - Potter's Syndrome Support Group / Forum
Research - "University of Michigan Potter's Syndrome Research"
They are the only known research that provides genetic analysis for Potter's Syndrome families in an attempt to identify the genetic causes of this birth defect.
I am so happy you found this page. I spent endless hours talking to doctors, reading books and researching online. The interesting thing about learning is that it leads to more questions and more answers. I believe the info posted here is (almost) everything you must know... so you can better comprehend and be prepared to handle any diagnosis, good or bad, from your doctor. The links are also here when available.

The information posted here also pertains to you IF:
  • You are Sexually Active?
  • You are Planning a Pregnancy?
  • You are Pregnant?
PLEASE read Folic Acid, Screening & Diagnostic Test... and Pass It On!!

REMEMBER: I am a Mommy NOT a Doctor.

Ask a medical professional to further explain and verify any and all the info you read. What I have written is the way I understand it. You may need to call your Doctor within a few hours or days with follow-up questions. Only so much NEW information can be absorbed at one time. You have many resources to help you... your doctor, your spouse, your parents, your friends, your memory, your books and the Internet.
BUT, be sure you DO NOT rely on "One Thing" or "One Opinion"!!!
Knowledge... is Power!!! Sir Francis Bacon
WARNING Graphic Pictures:
DO NOT view these images unless you are prepared.
A new window will open to view these pictures.


I bought a small journal and carried it with me everywhere. I wrote down practically every thought that entered my mind. When I did not have my Journal, which happened often, I was lucky when I had a scrap piece of paper or a post-it note. But more often I wrote notes on unconventional items like...
  • a napkin
  • a receipt
  • a piece of tape
  • a page in a book
  • even work papers

My notes helped me remember what to:
  • ask at my next appointment
  • ask during my next phone conversation
  • Google later
  • add it to my Journal

Call me sentimental, but I still have some of these notes. Someday they will make it into Hope's Scrapbook. :)

FOLIC ACID
SCREENING TESTS: Estimates the chances of your baby having certain birth defects. Screening Tests do not diagnose a problem.

1st Ultrasound - This non-invasive test uses sound waves to verify the age of the baby. The procedure is also used to screen the anatomy of the baby for abnormalities. The neck skin fold is measured. A thick neck skin fold may indicate Down syndrome or other abnormalities of the fetus. Some of these abnormalities are minor. There are no ultrasound findings that tell you for sure that the fetus has Down syndrome, and conversely, a perfectly "normal" ultrasound study does not guarantee a chromosomally normal newborn.

What is the difference between an Ultrasound and a Sonogram?
The picture taken during an Ultrasound, and typically received by the expectant parents, is a Sonogram.

Blood Tests - for AFP, hCG and UE levels. This should be scheduled between weeks 15 - 20. But, best time is during weeks 16 - 17. 

AFP Levels - Alpha-fetoprotein is a protein produced in the fetal liver. Some of this protein spills over into the mother's bloodstream during pregnancy. If your fetus has an Open Neural Tube Defect (ONTD), like Spina Bifida, more AFP than usual spills into the mother's bloodstream. Doctors can measure the amount of AFP in the mother's blood to find out if a baby is at risk for an ONTD.

hCG Levels - Human Chorionic Gonadotropin levels rise as the embryo grows. As a general rule, hCG beta numbers should double every 36 to 48 hours. hCG levels will top out by the end of the first trimester. A dramatic decrease in the levels may indicate a miscarriage has occurred or is possible, whereas a level that lingers or falls well below the normal range may indicate an ectopic pregnancy.  hCG beta levels can also be used to identify a multiple pregnancy. 

UE Levels – Unconjugated Estriol measurements are useful in the management of complicated pregnancy, prolonged gestation and in women with uncertain due dates. Establishing a pattern through serial measurements is essential, as levels vary among patients. Low or decreasing estriol levels during the third trimester indicate fetal distress.
TABLE OF CONTENTS
PREGNANCY BOOKS
A Journey with Wings
A family owned business we hired to release Hope's ashes over the Pacific Ocean by airplane.

Angels Flight
Loved ones ashes released as part of a Beautiful Fireworks Display.
I LOVED THESE BOOKS!!!!!
XOXO
DIAGNOSTIC TESTS
DIAGNOSTIC TESTS - can determine, with a fair degree of certainty, whether a baby has a specific problem. Women should consider a Diagnostic Test if their screening test suggests their baby has a higher chance of a birth defect or “screen positive”.

2nd Ultrasound - This non-invasive test uses sound waves to examine the anatomy of the baby for abnormalities. The procedure also is used to ensure safety during Chorionic Villus Sampling and Amniocentesis.

What is the difference between an Ultrasound and a Sonogram?
The picture taken during an Ultrasound, and typically received by the expectant parents, is a Sonogram.

Chorionic Villus Sampling - This test can be performed earlier than amniocentesis
(9 1/2 to 11 weeks). During CVS, a catheter is inserted through the cervix and a small sample of placental tissue is taken and examined for chromosomal abnormalities. The risk of miscarriage from CVS is between 1 in 50 and 1 in 100.

Amniocentesis - In this test, a small needle is inserted through the abdomen into the amniotic sac and used to withdraw a small amount of amniotic fluid. Fetal cells in the fluid are examined for chromosomal abnormalities, most notably Down's syndrome and NTD's. The test is usually performed around the 16th week of pregnancy, although early amniocentesis (12 to 15 weeks) is now available. The average risk of miscarriage from amniocentesis is 1:250, and slightly higher with early amniocentesis.
I learned... A Doctor should fully explain to you AND you should fully understand the purpose of Pre-Natal Care (care before pregnancy). Because, once your pregnancy test is positive... It is tests, tests and more tests!!! Screening Tests and Diagnostic Tests are very important. As well as, the results, the diagnosis, the care and treatment, if any. You need to be informed and prepared. Remember, you have the power. You Are the Mommy. This is your Baby, your Life and your Memories!
I LEARNED...
Memorial Options
Keepsakes
Start Your Journal
POTTER'S SYNDROME
DONATION
As with many of the topics I have written about, this one may be especially difficult to read. All I can say is, my thoughts, my words and my feelings are honest. Just remember the saying... "When life hands you lemons, make lemonade".

On August 4, 2005 we were initiated into a rare group, the group of expecting parents who KNEW our unborn baby would die shortly after birth. We were not in the group of expecting parents who DID NOT KNOW they would lose their infants suddenly during a sudden miscarriage, or complications during child birth. I am not here to decide which is better or worse. They are just different groups, that parents are unwillingly thrown into!

Infant Organ Donation - Shortly after our unborn baby was diagnosed with Potter's Syndrome...
I wanted to know if we would be able to save another baby with Organ Donation. I remember it was an incredibly hard thing to research. Not Organ Donation, but Infant Organ Donation. Society is well aware of Organ Donation for ourselves and possibly our loved ones, but not infants. I will assume this is due to the "rare groups of parents" I mentioned earlier. Unfortunately, each doctor we spoke to was not much help either. I am not putting blame on them, we just realized that they were not familiar with the process. Although, we were disappointed that we did not receive more assistance attaining names or numbers. Even though, I did not know much, I was particular about not receiving shots or taking medications that might interfere with Organ Donation during the remainder of my pregnancy. Basically, I continued to do everything as if our baby was healthy. I decided to included in our Birth Plan that we were interested in Infant Organ Donation. Then when we checked into the hospital our Nurses were wonderful and helped us with our request. Ultimately, Hope Angel could not be a Donor because she was too small and I was okay with that. Now looking back on my Memories of our time together. I am so happy I was able to hold, hug, smell and kiss her for 15 hours. Organ Donation would have ended our time prematurely. Which leads me to the conclusion about Infant Organ Donation... The amount of time a grieving parent has with an infant lost too soon, is never enough!!!

Breast Milk Donation - It was a hard tug on my heart strings when I realized I would never be able to feed our baby. It was the day my niece Sunny was born, August 22, 2005, and only two weeks after our diagnosis of Potter's Syndrome. Sunny was only a few hours old and was hungry. She was going to be eating formula so I got a bottle and began feeding her. This was actually the first time I had ever fed a baby that small. So when she was done eating a few minutes later... I was sad. Fortunately, the experience got me thinking about my breast milk.
  • Would my milk ever come in?
  • How much milk could I produce?
  • Where do I donate my breast milk?
  • How many infants could I help?
  • Could my donation save a baby?

I researched the benefits and process online but did not make any phone calls. I included the Milk Bank contact information in My Birth Plan. I really did that so I would not misplaced them. BUT, our wonderful nurses helped with that as well and had a Lactation Consultant come and meet with me. She informed me that lactation naturally occurs but "let down" is difficult when you are not holding your baby. So she suggested looking at a picture of Hope while I pumped. So I did. Although my first mistake was waiting almost 48 hours after Hope was born to pump. My second mistake was using a hand pump! My boobs were rock hard. Nothing was happening!!! SO the very next day we went to the hospital and rented the hospital grade double pump. It was a massive contraption, But it worked wonders, and even though I initially felt a bit like a cow... the immediate satisfaction and the though of making "lemonade out of my lemons" was perfect.

I pumped until my milk stopped coming in... Only 17 days and I was able to donate almost 160 ounces of Breast Milk! You will not be paid in money. In Fact, it will cost you the pump rental and the cost of bottles and tubes for sanitation reasons. Although, to me, the $100 was worth it

Dry Up Your Breast Milk - If you choose not to donate your milk or you want to dry up your milk, I have heard from many that this works.
  • Put Cabbage in the Freezer
  • Place the Cold Cabbage Leaves in your Bra
  • Replace Warm Leaves with Cold Leaves as Needed

Extra Breast Milk - If you have more milk than your baby can drink, Donate It.

Human Milk Banking Association of North America
San Jose, CA. Mother's Milk Bank... (408) 998-4550

United Kingdom Association for Milk Banking
Hope Angel.... LOVE was all she ever knew!!!