Please put a picture of your child or family here.

My contact information

Trisomy 18 Maternal and Child Health Handbook
A handbook for children with trisomy 18 and theirfamilies.
It can be filled out and used for the period frompregnancy to age 6.
We also made a special effort to have the hospital
staff and home support staff write messages to us.
We hope that everyone involved, especially children
with trisomy 18, will make this handbook a valuable
resource for them.

Contents
01 Pregnancy
07 Birth
13 NICU
29 Life at Home
46 Growth and Development Records
68 Q ＆ A
71 Messages from senior moms, dads and siblings
74 Introduction to the Trisomy 18 Support GroupA little treasureYour being here

You may be overwhelmed by what you have heard
from your doctor or by the information you gatheredfrom the Internet.
Although appropriate information is of course
necessary, remember to take some time to feel andengage with the life you are carrying andtemporarily set aside the facts and figures (and theanxiety they may bring).
Your baby will send you various messages, like "I amhere," "I'm alive," or "I'm trying to live."
Value how you feel at any moment. Embrace thevarious emotions you experience – try not to denyeven feelings of doubt or fear. Having a variety ofemotions is perfectly normal, and every feeling or
struggle is valid.
Such experiences will actually help you and empower
you to meet your baby as parents.
Share your feelings with someone who will be there
for you in times of difficulty.

Things to keep in mind during pregnancy
If you are pregnant and your child has been diagnosed withtrisomy 18,you may be be concerned about the child'sdevelopment and what will happen after the child is born.
You may also be concerned about how you will spend yourpregnancy.
It is recommended that you first consult with yourobstetrician and gynecologist, and have an early opportunity
to talk with the pediatrician (neonatologist) who will betreating your child after birth.
More and more medical institutions are offering meetings
between the parents and the pediatrician, and clinicalpsychologists are joining the meetings to support the family.

Things to keep in mind during pregnancy
The way the mother spends her pregnancy does not change
particularly because her child has trisomy 18. However,depending on the child's complications, more amniotic fluid may
be produced, causing signs of preterm labor.
It is important to have a proper prenatal checkup because it(Trisomy 18) may cause problems with your child's heart rate
and growth.
If you have symptoms such as an upset stomach or bleeding,contact your health care provider as soon as possible to get
the necessary medical attention.
This is common to all pregnant women, but daily bloodpressure monitoring at home is recommended as it can lead toearly detection of hypertensive disorders of pregnancy.
This is the time when you can feel the movement of the baby
and the daily movement is a sign that the baby is healthy.
It is natural to feel uneasy when looking at the ultrasoundimages and what the doctor has explained to you.
This anxious feeling can be relieved when you meet your baby.
It is also a good idea to talk with mothers who have actually
given birth to a child with trisomy 18 during pregnancy
through the Trisomy 18 Support Group.

Pregnancy Records

Feeling when your baby.
Day: //MEMO

A little treasureYour birthCongratulations on the birth of your baby!
Your baby is here to meet you. Your baby is lucky
to have you as a mother and a father.
Although medical procedures are essential to saveyour baby's life, ask the medical staff to help you
connect with your baby by looking at them,touching them, and smelling them.
We hope you have time to get to know your baby,
acknowledging, "You are the one I was carrying,"
and to introduce yourself to your baby by tellingthem, "I'm your mom/dad."
Even if it is just a short introduction, it will be a
precious moment marking the beginning of yourbaby's life and the start of your new family
history.
However, this moment together does not have to beright after birth if the situation does not allow. In
this case, still cherish the moment, and yourthoughts of "Thank you for coming into our lives"
will be conveyed.

Record of the time of birth
Birthdate(

Day/ Month/ Year)

Expected delivery date(

Day/ Month/ Year)embryonic period

(

Week)

Message from Parents

Messages from Hospital Staff

MEMOA little treasureYour heart feeling the wind,
the sunlight,
the air

You may be overwhelmed by seeing your baby
connected to monitors or machines in the NICU.
This may even make you feel hesitant to touch
your baby. However, the machines are there tohelp your baby, and your presence and touch canbe just as beneficial.
As you spend more time with your baby, you will
notice how they see the world and try tocommunicate with you by moving their little legs
and hands, looking at you, and smiling at you.
Even though your baby needs to be cared for by
medical staff, you are your baby' s family. The
bond between you and your baby will be fosteredand nurtured even in the NICU.
The medical team aims to provide you and yourbaby with a comfortable environment throughout
your baby's time in the hospital. Let the medical
staff know if you have some ideas for your baby'scare. The medical team is more than happy towork together with you to make your plan possible
for your baby.

Memorial
handprints

(

Day/

Date taken
Month/ Year)Memorial
footprints

(

Day/

Date taken
Month/ Year)

Medical Information
One complication that requires treatment is that mostchildren with trisomy 18 (syndrome) have congenital
heart disease. Some types are more frequent and haveincreased pulmonary blood flow, such as ventricularseptal defect, atrial septal defect, and patent ductus
arteriosus, while others are less frequent and more
complex, such as tetralogy of Fallot and double-outlet
right ventricle. In the type of congenital heart disease
that increases pulmonary blood flow, pulmonary
hypertension tends to be more severe in early infancy.
Respiratory complications may include diaphragmatic
relaxation, airway obstruction, and apnea.
Gastrointestinal complications include esophageal
atresia, omphalocele, and imperforate, which may
warrant early postnatal surgery. Gastroesophageal
reflux is a complication that becomes apparent sometime after birth and poses problems in respiratory,
nutritional, and infection control.
Urinary complications include horseshoe kidney,hydronephrosis, and inguinal hernia.
Skeletal complications may include articular contractureand scoliosis.
Ophthalmologic complications such as ametropia andphotaesthesia (glare) may also occur.
Development is generally slow, including motor,
comprehension, and language skills.

Medical Information
Aggressive medical treatment (neonatal intensive caresuch as respiration management, surgery for cardiac
problems, surgery for gastrointestinal problems,treatment of convulsion, and rehabilitative support) has
been shown to improve both life expectancy and qualityof life. Your child will continue to develop slowly but
steadily. The family sees the child's presence as apositive thing and knows that the child will respond to
it. The medical staff and the family share information
about the disease and the child's physical condition toprovide the best medical and educational support for thechild. In addition, psychosocial support for the family isalso important.

Vaccine❁A study conducted by SOFT showed that there were no
specific side reaction to vaccinations that are commonly
given. In Japan as well, vaccinations can be given as
usual while monitoring the child's condition. In addition,
prophylactic administration of Synagis is recommended
because RS virus infection can be severe. In addition,
because of the high prevalence of cardiac and respiratorycomplications, the COVID-19 vaccination is expected to
be a priority. We recommend that you discuss this withyour doctor and consider it positively.

Health care starting from NICU

Perinatal care❁

In case of prenatal diagnosis or suspicion, a pre-natal visit (greeting by thepediatrician [neonatologist] and nursing staff who will be treating the child) is
conducted. After birth, appropriate resuscitation will be performed dependingon the child's condition (e.g., endotracheal intubation).

Basic measures for the neonatal period❁

Provide respiratory support (including oxygen administration and artificial
ventilation) according to the child's condition.
Nutrition, temperature, infection, jaundice, etc. will be administered. Tubefeeding (gastric tube) will be done in most cases.
Chromosome examination is performed to confirm the diagnosis. Based on themost up-to-date and comprehensive information from the natural history andhealth history, the best medical treatment and support for the child should befound.

Respiratory complications❁

Early detection of apneic attacks and hypoxemia by monitoring oxygen
saturation (SpO2) and respiratory heart rate.
If the child's respiratory status is unstable (some problems are in the upper
respiratory tract, while others are in the lower respiratory tract such as lungs
or bronchi), or if there are respiratory infections or recurrent atelectasis, thecause is investigated by X-ray or CT. Treatment includes respiratory support
using oxygen administration and artificial ventilation, and drug therapy using
antibiotics and expectorants.
If apneic attacks occur, a search for the cause (which may be a symptom of
convulsions) will be conducted and optimal treatment will be given.

Cardiovascular complications❁

Early after birth, X-ray and ultrasonography are performed. It should be
accurately diagnosed whether the children has congenital heart disease, and if
so, what type and severity of the disease. In the case of diseases that increase
pulmonary blood flow (ventricular septal defect, patent ductus arteriosus, etc.),
we pay attention to the progression of heart failure and pulmonary
hypertension, and provide the best medical treatment (fluid restriction,
diuretics, inotropic drugs, etc.) according to the child's condition. Based on theevidence of surgery for congenital heart disease, we will consider theindications for surgery based on the child's circulatory dynamics and generalcondition. The family, pediatricians (neonatologists), pediatric cardiologists,
cardiac surgeons, and nursing staff will discuss the best treatment for thechild's health condition.

Health care starting from NICU
Digestive complications (including nutrition and feeding)❁

Pediatric surgeons are available to treat suspected gastrointestinal
complications such as congenital esophageal atresia and imperforate that
require treatment early after birth. Based on an accurate diagnosis, the besttreatment (including surgery) will be given according to the child's condition.
Oral intake training will be provided based on accurate assessment by
rehabilitation therapists while paying attention to respiratory and circulatory
conditions. If gastroesophageal reflux disease is suspected, it is evaluated byupper gastrointestinal contrast and 24-hour pH monitoring. Considering thedegree of reflux and the child's condition, the following measures will beconsidered: adding a thickener to the milk, using a duodenal tube, or
performing a gastrostomy/jejunostomy. If tube feeding is prolonged, thecreation of a gastrostomy and the use of enteral nutrition will be considered.

Neurological complications❁

If the child has convulsive seizures (or frequent apnea), the child will be
evaluated by electroencephalography, and anticonvulsants will be administered.

Urological complications❁

Screening of the renal and urinary tract system by ultrasonography is
performed in the newborn period. In case of repeated urinary tract infections,screening for vesicoureteral reflux by retrograde cystourethrography is
performed. Prophylactic antimicrobial agents and surgery will be considered if
necessary.

Otolaryngological complications❁

If there is a suspicion of laryngomalacia such as inspiratory wheezing,fiberoptic examination will be considered. Perform an audiometric test such as
auditory brainstem response (ABR). If there is a hearing loss, the type ofhearing loss (conductive, sensorineural, and mixed hearing loss) should bedetermined and the most appropriate treatment (hearing aid, etc.) should begiven. If the child has chronic otitis media, medication (e.g., expectorant) or
surgery (e.g., tympanostomy) will be performed.

Ophthalmological complications❁

Ophthalmologic examinations are performed in the newborn period, taking into
consideration the complications (cataract, glaucoma, corneal opacity, strabismus)
that may be present at birth. It is important to continue regular eye
examinations in infancy, early childhood, and school age. Use of eyeglasses
should be considered for myopia, hyperopia, and astigmatism. For photophobia,
the use of sunglasses should be considered.

Health care starting from NICU
Musculoskeletal complications❁

If there are complications from birth (polydactyly, etc.), they will be addressedin consultation with orthopedic and plastic surgeons (conservative treatment,
surgery).
Complications that are likely to occur after birth (scoliosis, hip dislocation, etc.)
will be taken into consideration, and regular checkups and treatment (orthotics,etc.) will be provided by an orthopedic surgeon.

Screening for malignant tumors❁

After 6 months of age, abdominal ultrasonography and blood tests are
performed every 6 months to screen for hepatoblastoma, Wilms tumor, etc.

Growth monitoring❁

Weight, height, and head circumference will be measured at each regular visit tomonitor the progress of growth (normal growth chart and growth chart forchildren with trisomy 18 will be used).

Developmental support❁

Developmental support is provided from early infancy (physical therapy,
occupational therapy, speech therapy [feeding and swallowing training, hearing
support, communicative support], etc.).

Genetic problems❁

Genetic counseling by clinical geneticists and certified genetic counselors(including psychosocial support for families, recurrence rate of the next child,and information on prenatal diagnosis) is provided.

Peer support and psychological support❁

Introduce support groups, such as the "Trisomy 18 Support Group(https://18trisomy.com/)", "Support Organization for Trisomy 18, 13, andRelated Disorders, SOFT (https:// trisomy.org/)".

Social support❁

Social support systems (Physical Disability Certificate, Rehabilitation Certificate,Special Child Support Allowance, Welfare Allowance for Children with Disabilities,
Pediatric Chronic Specified Diseases, etc.) are coordinated by specialists in thecase of home medical care, including hospitals, rehabilitation centers, andmedical care (considering the use of services such as home nursing, homerehabilitation, and respite hospitalization to reduce the burden on the child andfamily).

NICU records
Mechanical ventilator：No/Yes（The day I no longer needed a tube： / /）Oxygen therapy：No/Yes( Date finished：//）
Blood transfusion・Blood product：Red blood cell・blood platelets
Others（)
Incubator housing：No/Yes(The day I left for Cott：// ）Feeding tube：No/Yes(The day I no longer needed a tube：//）
Oral feeding begin：(//)
Ophthalmology consultation：No/Yes(No treatment・Photocoagulation・Other)
Anemia：No/Yes(・iron preparations ・erythropoetin ・ other )Brain test：MRI・Echo/ / opinion
Hearling test：//
resultSurgical：No/Yes()

Complications and tests
Ask your doctor to provide accurate information.
Disease name

Progress etc.

First memory while in hospital

/

/

/

/

/

/

/

/

/

/

/

/

Records at Discharge
Discharge day

Other

(

Day/ Month/ Year)At home infomation
Allergies

Medicine

Home visitation

Visiting nursing

Medical equipment
manufacture

Family pharmacy

Messages from Hospital Staff

MEMOA little treasure
Walking with youHome at Last!
Once your child goes home, they will be introduced
to a new environment with varying light andtemperatures. Your child may enjoy lively voices ornotice an appetizing smell. When ready to starteating solids, your child may enjoy homemade food.
If your child has a feeding tube, you can let themtaste a little homemade food before mouth care.
All the enriched stimulation from daily surroundings
will help your child to grow at their own pace.
As you and your child spend time together as afamily, you will find a series of miracles in ordinarylife.
Getting support from your community is essential,
regardless of how much medical need your child may
have.
Children grow not only in the family but also in thecontext of their community.
A society where children with Trisomy 18 haveopportunities to participate in every aspect of life
to the best of their abilities and desires will leadto a community that is friendly to everyone.

What you need to live at home

Oxygen concentrator
Mechanical ventilator
Heat and humidity inhaler
Aspirator
Pulse oximeter
Nebulizer
Ambu bag
Nasogastric tube
Elemental Diet tube
Gastric fistula tube

What you need to live at home

Nutritional supplement
Injection pump
Irrigator
Syringe
Chlorinated water
Suction catheter
Monitor sensor
Gauze
Fixing tape
Stethoscope

MEMOWhen baby first comes home
Situation

Parent's feelings

When baby first comes home
Sibling feelings

Feelings

DAILY SCHEDULETIMESCHEDULENOTESWEEKLY Schedule
MondayTuesday

WednesdayThursdayFridaySaturday＆Sunday

Medical Care Management
It is not uncommon for children with Trisomy 18 to retain many
complications and have to visit many medical departments.
Please consult with your primary care doctor as it may fallunder the category of Specific Pediatric Chronic Diseases.
The children may suddenly become ill. In such cases, it isextremely important to consider in advance what specificarrangements should be made for a hospital visit.
The pediatrician will be the center of this process, but it is also
important to summarize the current situation and treatment planfor each organ for the future, as it may not be possible to do
it at only one hospital.
The situation will probably change depending on whether thechildren have surgery or not and growing.
It is also important to keep an up-to-date summary of thesituation in case there are any changes in the way of handling.
By keeping these records, it may give you a chance to feel their
growth, and it will also be useful when it becomes difficult toprovide normal medical care due to disasters.
In daily life, we may need to keep an eye on medication
management at home, nutritional status (including the actual
method of oral and liquid nutrition), and breathing status suchas oxygen administration.
As they grow, their management situation will change, so it isimportant to check with the primary care doctor on theappropriate situation.

Medical Care Management
In addition to the above, it is also important to be aware ofyour family's physical and mental health.
It is just as important for the family to think about theirchildren as it is for them to think about their own mental
well-being.
For this purpose, you may want to consider using welfare
resources such as home nursing and home care.
For applications for Special child dependent allowance, Children's
Disability Welfare Allowance, certificate of intellectual disability,
physical disability certificate, and beneficiary certificate, pleaseconsider consulting with the disability welfare section of yourlocal municipality.
It is also a good idea to consult with family associations andsupport groups.
It is essential that both you and your family keep in mind thatyou must lead a life that is physically and mentally comfortable.

About Rehabilitation
Rehabilitation includes physical therapy (PT), occupational
therapy (OT), speech-language-hearing therapy (ST), baby
gymnastics, and swallowing training, etc.
PT is an area that focuses on coarse motor activities such as
moving and maintaining posture, OT on fine motor activities
such as daily activities, and ST on improving communication.
Swallowing training is often done as part of ST under theevaluation and guidance of an ENT doctor or dentist.
Rather than doing all of these at the same time, there areoften choices to be made, usually starting with PT dependingon the child's developmental status.
There are public rehabilitation facilities in prefectures, cities,
towns and villages, as well as private rehabilitation facilities
and visiting rehabilitation systems.
It is best to consult with your doctor about which
rehabilitation facility is best to use.

About Rehabilitation
The significance of rehabilitation is not only to improve thechild's various functions and prevent deterioration, but also toshare information with other family members.
The timing of the start of rehabilitation depends on thechild's situation and the situation of the rehabilitation
facility.
It is best to consult with a pediatrician for heart, breathing,and spasms, and an orthopedic surgeon for hip joints, large
joints in the upper and lower limbs, bone conditions, andmuscle strength.
Rehabilitation does not only mean that it has to be done in arehabilitation facility.
Depending on your child's situation and your family's living
environment, it may be difficult to go to a rehabilitation
facility on a regular basis.
In such a case, you may want to ask your child's PT, OT, or
ST doctor to take a look at your child's current situation(evaluation) and discuss ways you can do things at home
without strain.
It is important to consider the best way of rehabilitation foreach child and family so that they can feel the growth oftheir child.

Messages from Home Supporters

Messages from Home Supporters

Helpful Information
Women's Health Support Center❁

There are centers in your city, town, or village where you can get
advice on pregnancy, children and child rearing. The center is staffedby doctors, midwives, and public health nurses. Please feel free to visit
them.

Mother and child Health Handbook App 「BOSHIMO」❁

You can keep a record of your pregnancy checkups manage your child's
vaccination schedule, and get information about your local area. It
seems that more and more governments are introducing this system.

Father-Son Handbook❁

Recently, local governments have been issuing paternity handbooks forfathers. It seems to contain information on how fathers can participate
in child-rearing and how to help them balance work and family life.

Medical Information System for Children in Medical
Care❁

Family members can enter information about medical treatment andother matters using their smartphones or computers to create a
database. If you are transported to an emergency room while you areaway from home, emergency personnel and the medical institution towhich you are transported will be able to view the information. For
details on how to apply, please visit the following website of the
Ministry of Hearth, Labor and Welfare.

Preparing for Disasters❁

Disaster preparedness handbooks include those issued by your local
municipality and the "Disaster Prevention Notebook to Protect Babies
and Mothers" on the Disaster Prevention.
Information page of the Cabinet Office. It is a good idea to have a
copy on hand for preparedness.

For the first time, the day I was able toMemorial Day's//

Memorial Day's//

Memorial Day's//

Memorial Day's//

Memorial Day's//

Growth andDevelopment Keep a record of what happens at
Records the hospital and at home.

1~2 months old

3~4 months old

5~6 months old

7~8 months old

9~10 months old

11~12 months old

13~15 months old

16~18 months old

19~21 months old

22~24 months old

25~27 months old

28~30 months old

31~33 months old

34~36 months old

3~4 years old

5~6 years old

Record of medical checkup
1 month old

3 month old

6 month old

1 year old

Record of medical checkup
1 year and 6 months old

2 year old

3 year old

MEMOMedication Record

Utilizing the growth charts
Growth charts give us important information to see if yourchild is growing up in a healthy manner. You have probably
seen them before, as those for infants and toddlers can befound in the maternal and child health handbook, and thosefor school-age children can be found in school report cards.
When you go to your pediatrician for a checkup, your height,
weight, and head circumference will probably be measured.
The measurements can be shown on a growth chart to show if
your child is growing well. If there is a drop in weight, you
may need to check for nutritional status or complication
conditions (such as heart failure).
A growth chart for children with trisomy 18 is useful todetermine if your child is large, normal, or small for a childwith trisomy 18. The growth chart was shown in the paper
published in 1994 in the American Journal of Medical Genetics(AJMG).
Dr. Carey and colleagues (Department of Pediatrics, Universityof Utah) summarized the research of the "Support
Organization for Trisomy 18, 13, and Related Disorders, SOFT
(http://www.trisomy.org)", a support group in the UnitedStates. The growth chart is now available on the SOFT
website (https://trisomy.org/resources/surgeries-growthcharts/).
1) Baty BJ, Blackburn BL, Carey JC. Natural history of trisomy
18 and trisomy 13:I.Growth, physical assessment, medical
histories, survival, and recurrence risk. Am. J. Med. Genet.
1994 Jan 15;49(2): 175-188. doi:10.1002/ajmg.1320490204.
PMID:8116665
The figures from the next section are from this paper withpermission from Wiley-Liss Inc.

Weight trend (men and women)

Weight（Kg）
Age (years)
Height trend (men and women)

Height（cm）
Age (years)( trisomy 18 = solid lines : normal = dotted lines )Head circumference trend(men and women)
Headcircumference（cm）

Age (years)( trisomy 18 = solid lines : normal = dotted lines )Q&A
Q: As a father, I’m wondering how I can be involved.
A: You may often be asked to "support your wife". This isimportant, of course, but the father is also in a difficult
situation. It is natural for him to feel confused and lost.
That's okay. Please try to make time to spend with your baby.
Try to feel the messages from your baby. Then, I hope you canshare your thoughts with your mother. It is also important tohave someone, such as medical staff, psychologists, or atrusted friend, take care of your shaky feelings. With thesupport of the people around you, I hope that you will be able
to slowly build your new family.

Q: How do I tell my younger siblings about my baby with
Trisomy 18?
A: Each sibling is different in age and personality, and there is noright way to tell them. The important thing is to tell them that
their precious family member, the baby, was born in themother's belly before telling them about Trisomy 18. The baby
may need to be admitted to the NICU. Still, it would be nice toactually see the baby as soon as possible. Before the visit, talkto the parents and staff beforehand so that they will not be
surprised by the medical equipment or the baby's condition, andwelcome them with a smile. For younger children, I think it
would be better to tell them about the baby slowly as theirsiblings grow up.

Q&A
Q: Can a special test during pregnancy tell me how long mybaby will live?
A: It is impossible to know what the future holds for your childthrough blood test, ultrasonography, MRI scans, or genetic tests
during pregnancy.
We have a tally of life expectancy based on previous reports, but noone can know the life of your child. I think this is true for all of us,
including ourselves.

Q: Is it better to have a natural birth or a cesarean section?
A: A long time ago, there were many facilities that did not perform
cesarean sections even if the baby was in distress because children
with Trisomy 18 were short-lived.
Even today, there are still some facilities that have such a policy.
However, there are still some facilities that have such a policy.
However, it is considered paternalistic and undesirable today for
medical professionals to unilaterally impose a policy of "....so ….no".
I believe that the medical staff and the family should discuss anddecide what is in the best interest of the child, including whether or
not to have a C-section.

Q&A
Q: What should I do for the time being to live at home?

A: You may need to consider medical care, rehabilitation, education, andwelfare procedures for your child. Information about where you live isextremely important. It is important to keep in touch with yourdoctor, genetic counseling facilities, public health nurses, theDisability Welfare Division, the Children's Division, support groups, andother family members, and in some cases, it may be better for thefamily to proactively ask for information.

Q: I am very worried about the future.

A: Yes, it is easy to imagine that you may feel anxious about the
future,depending on your child's health condition. There are some things thatcan be managed and solved by the family alone, and others that are
difficult without the help of others. Family associations and support
groups may be able to help with the management of the family'smind.
You may want to consider using them. More importantly, if yourfamily member is experiencing mental or physical problems, it may be
a good idea to consult your child's doctor and receive appropriate
medical care through him/her.

A Message from a Fellow Mother and Father
Children with trisomy 18 come to us thinking, "It's okay
to go to you guys. Don't be so hard on yourself! Haveconfidence in yourself!
You may feel pain and suffering, but a lot of people will
help you. So let's live life to the fullest!
Thank you for being born. The time we spent together isan irreplaceable treasure for Mom. You are an angel now,
but please stay close to me.
I had a lot of anxiety at first, but thank you forchoosing me. I love you so much because you have yourown pace.
You are the strongest person in your little body, and you
are loved by everyone. Thank you for being born!
Don't worry about defining "normal" for yourself. You are
the only one in the world who matters.
Thank you for being born! Every day is a treasure withyou living each day to the fullest!
Children with trisomy 18 have their own pace. They may
be small or slow, but they are definitely growing everyday.

A Message from a Fellow Mother and Father
There will come a time when the days of trying tosurvive will be replaced by the joy of nurturing. It's
okay, it's okay. Don't be overwhelmed by despair! All
children grow up with the help of the people aroundthem. You can laugh, you can cry, you can be angry. You
and I, let's live our lives, cherishing the little things inlife, envisioning the future one centimeter ahead of now!
You're not alone!
Thank you for being born! I'm looking forward to the day
when we can all live together. I'm looking forward to the
day when we can all live together.
Thank you for being born into our family. I'll neverforget how you grew up in my belly for about eightmonths. I will deepen the meaning of what you havetaught me, and live in a way that will be praised by you
so that we can fulfill our family's mission.
Manaka, when I first held you in my arms, I couldn't stop
crying at the weight of your tiny body.
Even with their small bodies, these children are positive
about living to the fullest. Please take their lives inyour hands.

Message from a sibling
It wants you to play vigorously now on.
I love you.
Why are you so cute? Thank you for making me your sister.
I love you. I can smell the warmth of the sun for you,
Mizuki. I know this because I am your sister★
Mizuki is my little brother. I love you.

I can't wait to see you. (15 years old brother)
Get well soon. (5 years old brother)Thank you for being born from my mom.
Your oldest brother (age 7, from first grade)If you had lived...
I thought of all the things I would have done for you.
I'm working at a welfare center now. (older brother)

Introduction to Trisomy 18 Support Grouphttps://18trisomy.com/◇Type's of members
Family Members / children with trisomy 18 and their families
Supporting Members /Medical and welfare professionals who support thetrisomy 18 Association.
◇Dues
Regardless of the mouth of admission ; annual membership fee
is 1000 yen.
◇Activity＊offline meeting 「Free Place」
We provide a place where people can talk and interact freely
without setting at them.
It will be held in various locations around the country or
online.
＊News letter
Information about your child, medical information, books, etc.
＊Peer counseling
Consultation and support, We're matching members.
＊Publishing＊Cooperation with medical professionals.
We communicate with medical professionals, participate inconferences and other events, and express our opinions fromthe perspective of families.
We also collaborate with information on medical care andrehabilitation.
A book all about "Trisomy 18""Trisomy 18: Toward Better Medical Care and Family Support
for Children"
Hiroko Sakurai, Yoko Hashimoto and Tomoki Kosho, Editor
MEDICUS SHUPPAN, Publishers Co., Ltd./4180 yen

CONTACT.

BIOGRAPHY REPORT
Requirement for English class

Personal physician
Hospitals
Pharmacy
Home nursing station
SchoolTrisomy 18 Support Group
Date of issue: October, 2021
Editor: Hiroko Sakurai, Madoka Inoue, Yayoi Koizumi, Ritsuko Tokunaga,
Natsuki-Mama, Setsuko Murai, Katsumi Motoi
Contribution: Yoko Hashimoto, Hiroshi Watanabe, Tatsuro Kondo, Tomoki Kosho
Cover picture: Ayana Inoue
Poetry: "A Little Treasure" Atelier Lupinus
Special Collaborators: Yukiko Norikuni, Tsuyoshi Ochiai
We received a grant from the Kiguchi Welfare Foundation to create the handbook.