The decision to bring a child into this world is filled with a lot of joy, anticipation, and love, and for most people, it is primarily about deciding on the right time. However, bringing a new life into existence for a person with Muscular Dystrophy(MD) may not be very simple. The planning is clouded with questions about the future due to the genetics at play, the inheritance of the condition, and the overall well-being of the child.
Let us help here with a comprehensive guide that will enable you to make informed decisions and empowered choices.
What is Muscular Dystrophy and how is it inherited?
MD is a group of diseases that leads to progressive weakness and loss of muscle mass. It is caused due to abnormal genes (mutations) that disrupt the manufacturing of proteins that are important to build healthy muscles.
There are many different types of MDs. The symptoms of the most common kinds usually begin in the early years of childhood and it’s the boys that are mostly affected by the condition. However, there are other types of MDs whose symptoms don’t occur till adulthood. The condition is not curable but timely medications and therapy can help manage symptoms effectively and slow the progression of the disease.
The most common kinds are:
- Duchenne Muscular Dystrophy (DMD) – Affects mostly boys and is passed on by the mother through genes.
- Becker Muscular Dystrophy (BMD) – Similar to Duchenne but has a later onset and slower rate of progression.
- Myotonic Dystrophy – Can affect both men and women. It causes muscle stiffness and weakness and may be caused by a faulty gene from either of the parents.
- Limb-Girdle Muscular Dystrophy (LGMD) – Affects both genders and is inherited through either parent.
The common symptoms include:
- Frequent falling
- Difficulty getting up from a sitting or a lying down position.
- Challenges while running or jumping.
- Unbalanced walking that looks like a waddle.
- Presence of large calf muscles.
- Pain and stiffness in the muscles
- Learning problems
- Delayed growth
Why do families need to be careful before planning a baby?
MD is genetic, and therefore it is very vital for people who have the condition to understand how it is passed on to their children. As mentioned above some types of MD are passed on by the mother while some are by both parents and sometimes through a faulty gene from either one of the parents.
There are multiple physical and health challenges for people who are dealing with MD. if they wish to plan a pregnancy they have to be prepared for it and consider their health status as weak muscles can make a pregnancy very challenging.
Some types of MD affect the heart and lung muscles and this increases the complications during pregnancy.
A parent requires a lot of physical energy which may become an issue with a person with MD.
Hence careful consideration and following the doctor’s advice very closely are mandatory before making a major decision.
What are the family planning alternatives for people with the risk of MD?
Genetic evaluation– If a person has a history of muscular dystrophy in the family they need to do genetic counseling. Genetic counselors evaluate the level of risk of the gene being passed on and help families with various available options. These include
- Blood tests- Through which it can be determined which parent carries the MD gene.
- The level of risk- This shows what are the chances of the condition being inherited by the kids.
- Safe family planning- This includes informing parents of the other alternatives for safe reproduction.
Family planning alternatives– With innovations and advancements in medicine and technology, couples now have a chance to reduce or eliminate the risk of passing on MD to their children.
Some options are :
- Preimplantation Genetic Diagnosis (PGD) with IVF- This method is used in
- vitro fertilization (IVF). Embryos are examined for their existing genetic conditions before they are planted in the uterus. This enables the couple to select the healthy embryos that don’t carry the MD gene.
- Prenatal Genetic Testing- This test is for couples who have conceived already and want to know if their fetus has inherited the gene for MD. Prenatal testing is done through two tests namely, the Chorionic Villus Sampling which is conducted around the 10-13 week of pregnancy, and Amniocentesis which is done between the 15-20 weeks of pregnancy.
- Using a donor- If one of the parents is a carrier of the MD gene then using a donor egg or a donor sperm depending on which parent embodies the gene, can remove the risk of MD being passed on to the baby.
- Adoption- Adopting a child is another viable alternative if there is a high risk of the child inheriting the gene from either of the parents.
How do parents prepare for pregnancy with MD?
It is important for the couple to consider taking good care of their health and well-being as pregnancy can be an additional strain on their body.
These are some crucial things to note.
- A pre-pregnancy check-up to determine good physical health before pregnancy.
- Taking adequate care of nutrition as well as muscle strength and energy levels.
- Making necessary changes in the immediate environment so the care of the child is not compromised due to mobility issues.
- Taking help from loved ones and health care professionals to help them through the challenges with ease.
- Join support groups and talk to other couples who are in a similar situation. This provides the strength and motivation to go on.
To summarize, MD can be overwhelming, and planning a family with the condition can be a very emotionally grueling phase. But with advancements in medical care and the availability of professional help, the dream of expanding the family can come true and bring endless joy.
The most important thing is to go with what feels right to you, consult the doctor, and move ahead with confidence and hope.
