Family Planning

Family planning and birth control is not just prevention of pregnancy but considering advantages and disadvantages of natural or alternative options to become a pregnant.

If you have Neurofibromatosis; NF1, NF2, and Schwannomatosis, you should know the risks and options for birth control for best timing and things to do for safe family planning. Risk limit is not just passing NF to a child.

1. Did you know women may have tumor growth as a result of pregnancy?^[1]
2. Did you know some methods are safer than others?
3. Did you know childbirth might cause specific tumor growth?
4. Can you go nine months without medication of any kind?
5. Did you know many medications can make it unsafe to have a child while taking the medication?
6. Did you know some commonly used NF medications can make you infertile others can result in a miscarriage?
7. Have you considered having eggs or sperm frozen for when you are ready so chemotherapy cannot harm your future children?

1. Medication Pregnancy Issues

Many medications individuals both male and female with NF2 need to take often can cause pregnancy complications. Medications that may result in issues include but are not limited to; 1) Epilepsy medications, 2) Pain Killers and 3) Clinical Trial medications.

1. Epilepsy

If you are female and taking Epilepsy medications, talk to your doctor about options.

2. Painkillers

Until recently the only suggested painkiller a woman could take safely during pregnancy was Acetaminophen (Tylenol). Recently Tylenol was proven to potentially cause Attention-deficit / Hyperactivity Disorder (ADHD) in children if a mother takes it during pregnancy.^{[Medical News Today, July 2016]}

3. Clinical Trials

NF2 Clinical Trial medications, chemotherapy - Target Tumor Treatments, include a wide variety of treatment options that may cause issues for both men and women at the very least while taking these medications.

• Men: Medication a man takes can damage sperm, but while sperm is something the body regularly months after the treatment is stopped there it is likely new sperm will be healthy. This is likely if the medication was a Target Tumor Treatment.
  However; some Chemotherapies in the past have damaged DNA, where children the result of people on some of these medications would not just be at risk for the health condition the parent has, but additional health issues as well.
• Females: At birth all eggs a woman has for offspring are fully formed so all medications a women takes in her life can damage eggs and therefore any child she may carry. Few medications typically given damage eggs, but this can be the case with Chemotherapies even when they are Target Tumor Treatments; these treatments typically disrupt menstrual cycles and while in theory a few months after stopping these types of treatments pregnancy is possible, some people develop Premature Ovarian Failure (POF) and therefore cannot have children at all even if the treatment stops.

2. Genetics

NF2 is an Autosomal Dominant Condition and tumor growth is highest during changes in hormone levels. Because of these things it is important for anyone with NF2 to be aware of different strategies to have children.

If planning pregnancy and you are the first in your family to have NF2, it is important to talk to a geneticist to determine the chances your child may develop issues sooner than you did. The only way to know for certain what requires genetic testing.

The chance a parent will give NF2 to a child is approximately 50%, but depending how a parent was born with NF2 would determine if the chance is lower.

• a parent with only Unilateral Vestibular Schwannoma is (10% of individuals with NF2 develop VS tumors on only one side); 1 in 12
• a parent with Bilateral Vestibular Schwannoma and no identifiable NF2 mutation in blood; 1 in 8
• a Mosaic parent with NF2 transmitting the disease to their offspring when mutation cannot be identified; 34%
• all other cases of NF2 the rate is: 50%

3. Natural Pregnancy

With Natural Pregnancy this option puts both baby and mother at risks.

Mom

For mom, during pregnancy, the hemodynamic changes, which is the change of blood flow in the body for compensation of fetal development, to support the physical needs of the baby, can result in tumor growth, specifically Meningioma.[Wiemels, 2010]

Tumor growth may only happen if an individual is prone to Meningioma, pregnancy may not affect other tumors.

Baby

The baby has the 50% chance of birth with NF2 and while location of tumors and other NF2 issues are typically the same, the baby could have a more severe case than its mother.

4. Pregnancy Prevention

1. Birth Control Pills

There is a debate that hormones affect tumor growth and while there are some newer lower dose hormone pills available, this still may not be safe.

2. IUD (Intrauterine Device)

An IUD (Intrauterine Device), is a simple T Shaped device that can be easily implanted and removed by a doctor during a regular gynecological exam. It blocks sperm from reaching eggs. It is available in Progesterone and Copper.

• Progesterone: Progesterone is the most commonly used IUD's by gynecologist's However, this uses hormones which may not be safe for people with NF2.
• Copper: Copper is a safer NF2 IUD choice since no hormones are required for it to work. Unfortunately, insurance companies rarely cover the cost of Copper IUD's.

3. Sterilization (Getting "Tubes Tied")

Having Tubes Tied is a permanent means of child prevention. It is important to understand that attempting to have a reversal later is possible, but does not always work.

• Women: Tubal Ligation
• Men: Vasectomy

5. Chorionic Villus Sampling (CVS)

Chorionic Villus Sampling (CVS) is genetic testing after 10 to 12 weeks of pregnancy.

6. Pregnancy through IVF (In Vitro Fertilization)

IVF (In Vitro Fertilization), is assisted reproductive technology (ART) that allows an embryo to be implanted for conception.

Advantages:

1. Oocyte or Semen Cryopreservation (Egg or Semen Freezing): Women are born with a certain number of eggs. Therefore every medication taken can also affect eggs. Chemotherapy type medications are known to cause a problem for pregnancies later. Having eggs removed prior to these treatments for later implantation can prevent damage to them.


2. Donors: Option of either egg or sperm donor.


3. Pre-implantation Genetic Diagnosis (PGD) - Genetic Tests: PGD (Pre-implantation Genetic Diagnosis), a genetic test before replantation an egg as an embryo. Not every location that does IVF does PGD. Many locations for IVF are to help women who have difficulty with natural conception.

Disadvantages:

1. Increased Hormone Level Treatments: The first step in IVF is that women are given an increased dose of hormones to produce multiple eggs at the same time. This alone and not just the pregnancy might be dangerous to a women with NF2. [Wiemels, 2010]


2. Cost: This is very expensive and is not covered by insurance.


3. Pregnancy and Chance of Increased Tumor Growth: November 2012 a study report confirmed that there is 'Dramatic Growth' of Meningiomas in Pregnant Women, each tumor and each woman might experience different amounts of increased growth, but there is a definite link. This may also affect other tumor types as well.


4. No Guarantees of Conception: Implanting one embryo might not result in pregnancy; therefore multiple embryos need to be implanted.


5. Each Embryo Implanted is a Potential Baby: Any number of implanted embryos can live. A choice would need to be made of how many to keep and how many to abort.

7. Additional Alternatives

• Adoption
• Foster Care

8. Additional Sources to Review

• Increased Tumor Growth
• Premature Ovarian Failure (POF)
• NF2 Genetics

9. Sources

1. Wiemels, J., Wrensch, M., & Claus, E. B. (2010). Epidemiology and etiology of meningioma. Journal of neuro-oncology, 99(3), 307-314. http://link.springer.com/article/10.1007/s11060-010-0386-3#page-1 | DOI: 10.1007/s11060-010-0386-3


2. "Blood Flow Changes, Not Hormones, Explain Growth Of Benign Tumors In Pregnant Women." Medical News Today. (November 2012)
   Source: http://www.medicalnewstoday.com/releases/253111.php


3. "Acetaminophen use in pregnancy linked to autism, ADHD in offspring" Medical News Today. (July 2016) http://www.medicalnewstoday.com/articles/311418.php


4. CNN. October 30, 2017 "Study links acetaminophen in pregnancy to ADHD, but experts question results" Possible risk if used by mother or father. http://www.cnn.com/2017/10/30/health/acetaminophen-adhd-pregnancy-study/index.html
5. Akella, Sraavya S., et al. "Vestibular Schwannoma growth during pregnancy: case report of neurofibromatosis type 2 in pregnancy." (2018): 1.
   https://ir.uiowa.edu/cgi/viewcontent.cgi?article=1094&context=pog_in_press
6. target="_blank">https://www.inverse.com/article/61967-sperm-de-novo-mutation-evaluation-autism