Facts & Myths Facts & Myths
Myth: Anencephaly is a very rare birth defect.
Fact: Anencephaly is a relatively common neural tube defect, occuring in approximately one in every thousand pregnancies.
Myth: Anencephaly occurs when a mother does not get enough folic acid in her diet.
Fact: There is little known about the causes of anencephaly and other neural tube defects. Current research suggests that there are many interplaying causal factors. In addition to the mother's nutritional status, harmful chemicals in the environment, certain pre-existing health conditions and genetics are all thought to play a role. Each case of anencephaly is unique; we can only speculate as to what causes a particular case.
Myth: Anencephaly is incompatible with life.
Fact: Babies with anencephaly, when carried to term, often surpass their life expectancies and survive for hours, days or weeks after birth, with little medical intervention. Miraculously, some have survived for even longer. Baby Faith Walker of Canada lived for three months and four days, baby Marcela de Jesus Ferreira of Brazil lived for over twenty months, baby Nicholas Coke of the United States celebrated his second birthday in December of 2010, and baby Vitoria de Cristo of Brazil recently celebrated her second birthday! (Janurary 2012)
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Facts & Myths part 2 Facts & Myths
Myth: Babies with anencephaly are unconscious and cannot think, feel, see or hear.
Fact: It is generally believed that babies with anencephaly cannot think, feel, see or hear because they lack a developed cerebrum, but this theory is based solely on the speculation of medical professionals and is not adequately supported by scientific evidence. Many parents would disagree with this statement based on first-hand experience with their children. Babies with anencephaly have been known to display remarkable abilities at birth, such as cooing, crying, smiling, and responding to internal (i.e. hunger) and external stimuli. It is not uncommon for babies with anencephaly to breathe without difficulty, to drink milk, cry, grip with their hands, sleep and wake, and respond to their surroundings.
Myth: If a baby is found to have anencephaly, the pregnancy should be terminated for the safety and well-being of the mother.
Fact: There is no increased risk to the mother's health if she wishes to carry her baby to term. Terminating the pregnancy would in no way benefit the mother or child and should therefore not be encouraged as an option. Abortion would only compound the mother's grief and rob her of precious time that could have been spent with her child. The best option for both mother and child is to continue the pregnancy.
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page 3 of facts and myths Facts & Myths
Myth: Babies with anencephaly are shocking to look at.
Fact: There are many shocking photos of anencephalic babies displayed on the internet, but the images shown are typically of unclothed, premature babies. These images are intended to shock. What do full-term babies with anencephaly look like? Like their parents, of course. From the eyes down, an anencephalic baby's physical appearance is virtually unaffected. Above the eyes, the severity of the defect varies; a head dressing can provide emotional relief to a mother who is fearful of seeing the affected area.
Myth: There is no point in carrying a baby with anencephaly to term. It is better to induce labour right away and get it over with.
Fact: There are many reasons why a mother might choose to carry her baby to term: so that she can cherish the remainder of her pregnancy and have as much time as possible with her baby, so that she can cuddle her baby, dress her baby in a special little outfit, take beautiful photographs, make hand and foot prints, so that her family and friends can share in the celebration of her baby's life, so that her baby will get to meet his or her siblings, or simply because she feels it is the right thing to do. There are countless reasons why continuing the pregnancy is a worthwhile journey for everyone involved.
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Decisions Decisions
If your unborn baby has recently been diagnosed with anencephaly and you are in the process of deciding whether or not to carry your baby to term, you have come to the right place.
Neither road is easy when you are told that your baby has anencephaly but there is only one road truly worth taking in this case, and that is to continue your pregnancy.
Induced abortions are harmful to both the child and mother. There are no added risks associated with carrying a baby with anencephaly to term, contrary to what some physicians claim. Forcefully ending your pregnancy would not only make you personally responsible for your child's death but would also rob you and your family of precious time that could be spent with your baby.
You have nothing to lose by seeing your baby's life through, and there is more to gain than you could ever imagine. The moments you spend with your baby will prove to be priceless; time that you wouldn't trade for anything else in the world.
Choosing to love your baby unconditionally and to cherish the time you have together is a decision you will never regret. Not only will you get to enjoy the rest of your pregnancy and possibly get to spend many beautiful moments together, but you will have peace in your heart knowing that you loved your baby to the fullest and did the right and selfless thing.
For more support on carrying to term, please follow this link to the "Anencephaly Blessings From Above" online support group:
http://health.groups.yahoo.com/group/anencephalyblessingsfromabove/
Preparing for the birth Preparing for the birth
Although you cannot control what happens on the day of your baby's birth, it is a good idea to plan ahead as much as possible. Creating a birth plan will help your care providers to understand what your wishes are for the delivery and post-natal care of your baby.
Post-natal care Post-natal care
Although it is not necessary (and perhaps unethical) to take extreme measures to prolong your baby's life, you may want some helpful advice on how to best care for your baby after he or she is born. For practical advice on delivering post-natal care, please select one of the following categories:
Head dressings
Words of comfort Words of comfort
Psalm 23
Matthew 12:26
Jesus looked at them and said, “"With man this is impossible, but with God all things are possible.”"
Matthew 7:7-8
"Ask and it will be given to you; seek and you will find; knock and the door will be opened to you. For everyone who asks receives; the one who seeks finds; and to the one who knocks, the door will be opened."
John 14:1-7
“ "Do not let your hearts be troubled. You believe in God; believe also in me. My Father’s house has many rooms; if that were not so, would I have told you that I am going there to prepare a place for you? And if I go and prepare a place for you, I will come back and take you to be with me that you also may be where I am. You know the way to the place where I am going."
Thomas said to him, "“Lord, we do not know where you are going, so how can we know the way?”"
Jesus answered, “"I am the way and the truth and the life. No one comes to the Father except through me. If you really know me, you will know my Father as well. From now on, you do know him and have seen him.”"
John 16:33
“ "I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world.”"
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Page 13 Simple dressing
This simple saline dressing will last from 12-18 hours if done properly. Your baby will only be involved for about 15 minutes of the process and the rest is preparation time.You may want to discuss these ideas with your care provider(s) before the birth of your baby.
What you will need:
- a change table
- a sterile dressing kit
- a few sterile 4x4 gauze pads
- a bottle of sterile 0.9% saline solution (or several pre-loaded 10mL saline syringes)
- a sterile gauze bandage roll
- a roll of perforated white surgical tape (Medipore)
- an incontinence liner (a.k.a. blue pad)
- several sterile cotton-tipped applicators
- a large bowl of warm water
- some clean towels
- someone to assist
Preparation:
1. First, make sure the room is plenty warm. Around 25 degrees Celsius is ideal. This may seem excessively warm to you but your baby may get wet and become cold.
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Page 18 Simple dressing
2. Wash your hands thoroughly, using antibacterial soap. Make sure to use a fresh, clean towel for drying.
3. Your area must be as clean and sterile as possible, so lay down clean sheets or towels wherever you are working. You may find it easier to work with baby's head propped up slightly. You can use carseat padding underneath some towels to make a snuggly "bed," if you like. Be creative and use what works best for you.
Have all your supplies ready and within reach. You may want to tear the packages open to get them ready, but don't take them out of their packages completely, or they may become soiled. Make sure to place the supplies on a clean surface (lay them on top of a clean towel or sheet).
4. Open your sterile dressing kit, being careful not to soil it (there should be sterile tweezers tucked in the tray's covering to help you). Once the kit is opened, you should have a tray of supplies sitting on top of a sterile field. Using your sterile tweezers, tranfer the scissors and other sterile tools onto the sterile field. If there is an additional sterile field folded up inside the tray, unfold it, touching only the outside of the sheet. This sterile field will go underneath your baby's head. Leave the gauze pads inside the tray and open up some additional sterile gauze pads: tear open the packages and drop them in the tray so that you do not soil them.
5. Fill a large bowl with warm water. Place the bottle of sterile saline solution inside the bowl to warm-up. The solution should be as close to body temperature as possible.
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Page 14 Simple dressing
6. Wash your hands again, as thoroughly as before and be careful not to touch anything that is soiled (a doorknob, your clothes, or anything else that isn't sterile).
7. Using the sterile scissors, cut a peice out of the incontinence liner large enough to cover the cranial opening and any exposed neural tissue. One side of the liner should be absorbant and the other side should be water-resistant. After cutting out the peice, lay it on a sterile field with the absorbent side facing up (the absorbent side will go against baby's head, covering a few saline-soaked gauze pads; the water-resistent side will retain the moisture).
8. Check to make sure your saline solution is an ideal temperature. Pour a little bit on your arm to make sure it isn't too hot or too cold. The saline solution should be as close to body temperature as possible. Pour some of the solution into the tray. You are now ready to do the dressing.
Dressing:
1. Place your baby on the sterile area where you will be working. It may be best to undress and cover your baby with clean towels for warmth. If your baby's clothes are left on, he or she may become wet and cold. Use your best judgement.
2. If your baby has a head dressing on already, carefully remove the old dressing. If you suspect that the underlying gauzes may be sticking to the baby's head (due to drying), be extra careful. If there is any resistance whatsoever, soak the underlying gauzes with warm saline solution for a few minutes before attempting to remove them.
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Page 15 Simple dressing
3. Once the old dressing has been removed, use the warm saline solution to cleanse the affected area, being extremely gentle and careful of any neural tissue that is exposed. It should be noted that babies with anencephaly can often feel and are responsive to touch. Be extra careful when cleaning around folds and tracts that lead directly inside the head. Where necessary, use saline-soaked gauze pads or cotton-tipped applicators dipped in saline solution to gently remove any drainage.
4. Drop three or four 4x4 gauze pads into the tray filled with saline solution, being careful not to soil them. Using sterile tweezers, transfer the gauze pads onto the cut-out peice of incontinence liner, which should be lying with its absorbant side facing up. Arrange the gauzes on top of each other in a staggered fashion, covering the majority of the liner.
5. Put on sterile surgical gloves (the kind that come in an individual sterile package). It would be helpful to have an assistant to help with this next step, as it can be a bit tricky. Pick up the prepared dressing (the peice of incontinence liner with saline-soaked gauze pads on top) and place it on top of baby's head so that the gauze pads cover the affected area. With one hand, gently hold the dressing onto the baby's head. With the other hand, wrap the gauze bandage roll around the baby's head and under the chin in a figure-eight pattern, making sure to pass the gauze under the chin and not at the neck (as this could interfere with breathing). Use the white surgical tape to secure the gauze. Check to make sure that the cranial opening and any protruding neural tissue is well covered and that the dressing is not too loose or too tight. The dressing is now complete. Immediately wrap baby in a warm blanket and return to mother.
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