HUMEDITロゴ

What it means to be a parent with Down syndrome

What it means to be a parent with Down syndrome

Counseling is conducted in order to acquire correct knowledge and understanding of Down syndrome and to face the challenges of raising children in the future.
Let's look at some of the most commonly cited concerns about childbirth and child rearing.

The Future of Raising a Child with Down Syndrome

The most common genetic disorder is Down syndrome.

The human body and cells normally contain 22 pairs of chromosomes, but Down syndrome, known as 21 trisomy, occurs when the 21st chromosome is reduced to three. Because it is a chromosomal abnormality, its occurrence cannot be controlled or treated, and most cases result in miscarriages or stillbirths, with only about 20% of babies actually being born.

Even if the child is born safely, various symptoms such as congenital heart disease, mental retardation, and weak muscles are manifested, but there are large differences among individuals. As they grow up, some children attend regular classes, others special-needs classes, and with treatment and support tailored to their individual circumstances, life is not difficult.

Down syndrome has a longer life expectancy of 50-60 years, and many celebrities are active in various fields. However, for fathers and mothers who are actually raising their children, there are probably a number of obstacles that must be overcome. If my child has Down syndrome…what choices should I make?

What is the purpose of having NIPT?

Genetic disorders such as Down syndrome can now be tested for while in the mother's tummy.

  • Those who will be 35 years of age or older at the time of delivery
  • Those who have major concerns about genetic disorders such as Down syndrome
  • Those who have genetic disorders in other children.
  • Those who meet these conditions are eligible.

Although the number of people undergoing NIPT is increasing each year, the purpose of the test is not to find a disease or abnormality, but rather to go beyond that. The true purpose is to reduce the burden on the baby and to create the optimal birth method and environment for raising the baby, in the event that a genetic disorder, including Down syndrome, is suspected or found to be diseased. Sometimes NIPT is referred to as "selecting for life," but that is not its original purpose.

Down Syndrome is caused by an abnormality in the 21st chromosome, called "21 trisomy", which has a higher birth and survival rate than 13 and 18 trisomies, which can also be examined by NIPT. 21 trisomy (Down Syndrome) occurs in approximately 1 in 1000 children, 21 trisomy (Down syndrome) occurs in approximately 1 in 1000 live births, and the rate tends to increase with older age.

See:EUROPEAN JOURNAL OF PEDIATRICS(European Journal of Pediatrics)

It is known that 90% of those who undergo NIPT and are diagnosed with an abnormality, that is, those who receive a high "positive predictive value" result, choose to have an abortion. The positive predictive value refers to the "probability that a positive test result is obtained and a confirmed diagnosis is made, indicating that the patient actually has the disease.

Many people who are diagnosed with Down syndrome as a result of NIPT often wonder if they have done the right thing by taking this test. However, as mentioned above, the purpose of taking NIPT is to "prepare" in case the disease is found. Of course, please be aware that while many people choose to have an abortion, many others accept the fact and prepare for the birth in the best possible way and with the best possible support.

Becoming a parent with Down Syndrome, to relieve anxiety.

Down syndrome is a disease that can have a variety of complications that vary from person to person, and no matter how long life expectancy is increasing, it is impossible to predict what the future holds.

What will happen to this child when we, the parents, are gone? How much will it cost for hospital visits and medical care? What will happen to his growth, will he be able to go to school and get a job?

Various thoughts and feelings will be intertwined. However, it is the "counseling" when undergoing NIPT that will remove and resolve your concerns about these issues one by one.

What kind of anxiety arises when we think that our child has Down syndrome? Counseling is provided in order to gain correct knowledge and understanding of Down syndrome and to face the challenges of raising a child with the syndrome.

Let's look at some of the most commonly cited concerns about childbirth and child rearing.

Expenses

Although complications are likely to occur and care is needed immediately after birth, during the growth process, and even after adulthood, people have a strong image that it is difficult to afford the costs of hospital visits and treatment. However, a variety of government support is available for raising a child with Down syndrome.

  • Special Child Support Allowance
  • Welfare Allowance for Disabled Children
  • Childhood Chronic Disease Medical Subsidy System

In addition to receiving these subsidies, there is also support for those with disabilities or illnesses to utilize various systems, such as the "Rehabilitation Certificate" and "Physical Disability Certificate. Each municipality may offer its own subsidies, so it is advisable to thoroughly research and prepare your application before giving birth.

Growth

Down syndrome is characterized by a very slow growth rate and slow motor activities such as crawling and walking. This is due to the slow development of muscles, and normally, the child's head is fully developed at around 4 months, and the process of walking at around 1 year of age also occurs a little later, but the child grows slowly. Even so, depending on the degree of development, it may be possible for the child to attend preschool from a very young age, or to show significant development through early medical care and education, making it possible to improve the quality of life. It is also known that it is possible to speed up the growth process by promoting muscle development and active verbal communication.

Health Care

Down syndrome often causes serious complications. Some are immediately apparent at birth, while some develop in adulthood.

  • Thyroid dysfunction
  • Hyperlipidemia
  • Hearing loss
  • Obesity
  • Alzheimer's disease, etc.

Although these complications cannot be completely prevented, they can be prevented from worsening by receiving prompt/appropriate treatment when changes are noticed. For this reason, it is important to work with a physician according to the symptoms of Down syndrome.

Thus, if there is a suspicion of Down Syndrome or it is discovered that the baby has Down Syndrome, it is necessary to clarify what kind of concerns there are in terms of childbirth and childcare. Then, by taking measures to eliminate the anxieties one by one and creating a specific environment by asking for cooperation from those around you, the baby will gradually grow and the parents will gradually be prepared to accept their child with Down Syndrome.

Come to a better understanding with your trusted doctor and partner.

Do you raise your child as a "Down Syndrome child" or do you raise him or her as his or her own individuality? It is easier said than done, but many people with Down syndrome have actually grown up, gone to school, made friends, found jobs, become independent, and some have even gotten married. Instead of being pessimistic about Down syndrome based solely on conventional images, it is necessary to first understand what Down syndrome is all about.

In undergoing NIPT, it is hoped that the patient will first undergo appropriate counseling, which will provide many opportunities for anxiety to be reduced and worries to be resolved. While NIPT is a risk-free test for the mother, it is important to understand the advantages and disadvantages of the test. In order to receive full support, it is recommended that couples undergo testing and counseling at a NIPT facility accredited by the Japanese Medical Association to discuss the results with their spouses.

Raising, giving up, and giving birth. Discussions with the couple and a firm tag-team with a trusted doctor under counseling will strengthen their hearts as parents.