When Your baby Lives

Bringing your baby home

You may wish to consider bringing your baby home. At home, your baby will be in a family situation where the process of getting to know and care for her will be less clinical and more private. The constant visiting and the burden of travelling may be leaving you emotionally drained. The decision to bring your baby home is one you should make in consultation with the medical staff at the hospital, but whatever decision you make, it will be the right decision for you and your baby.

There will be a number of factors for consideration:

A Gradual Transition
Perhaps you could take your baby home for a few hours per day, then maybe an overnight stay, a weekend and, gradually, work up to taking your baby home permanently, if you wish.

Family Circumstances
You are the best judge of the situation. You may have other children, difficult living conditions or other family problems to deal with.

Medical Equipment
Some hospitals will provide or arrange medical equipment, such as oxygen, an apnoea monitor, or a suction machine for home use.

Readmission to Hospital
Check with your baby’s paediatrician what the hospitals policy is on readmission. Most hospitals have open admission for such babies.

Caring for your Baby
If there are any aspects of caring for your baby at home that you feel unsure of, your paediatrician, nurses in the S.C.B.U., family doctor or public health nurse will advise you on how to deal with situations that may arise.

Telephone Contact
Have ‘phone numbers near at hand that you can ring if you are worried about your baby, need advice, or in an emergency:

  • The S.C.B.U.
  • Public health nurse
  • Your family doctor
  • Useful contacts at the back of this book

Tube Feeding
Many parents of babies with Patau’s or Edwards’ Syndrome tube feed their babies. If you do not feel confident about inserting a tube, you may be able to arrange for a nurse in your locality to assist you .

Possibility of Baby Dying at Home
Parents whose baby died at home report that it was a peaceful experience.

You may like to read the information on “Caring for your Baby”, “Respite Care”, and “Entitlements”.

Caring for your baby

The following information is for parents who are caring for their baby or child at home or helping to care for her in hospital or another environment. The following are common problems of babies and children with trisomy 13 or 18. Your baby may have none or very few of these problems or she may experience more difficulties.

Apnoea (breath holding)
Apnoea is most common in infancy. The baby stops breathing without warning and becomes limp and blue. If you notice your baby having an apnoeic spell move and stimulate her to encourage her to remember to breathe. In rare instances resuscitation may be needed. However your baby will usually begin to breathe again without any assistance.

Eye care
If your baby has a tendency to eye infections, careful attention to bathing the eyelids can help. Clean the lid edges using a sterile saline solution wiping away from the direction of the nose.

If your baby suffers from sensitivity to bright light avoid placing her in direct sunlight or facing strong light. Shade her eyes if necessary.

Heart care
If your baby’s heart defect is relatively mild then it is best to treat her as normally as possible. However, if her heart condition is serious or terminal, it is advisable to:

  • Give small feeds on a frequent basis
  • Consider having oxygen in the house in the form of an oxygen cylinder and a special mask, available through your health board.

Immunisations
Studies in the U.S.A. conclude that there is no evidence for an increase in adverse reactions to immunisations in babies and children with Patau’s syndrome and Edwards’ syndrome.

Infection
Babies with chromosomal abnormalities tend to get infections more easily than other children. They are more susceptible to:

  • Upper respiratory infections such as colds and bronchitis
  • Pneumonia
  • Ear infections
  • Urinary tract (kidney) infections

Irritability
Irritability is a common feature of babies born with Patau’s syndrome. Poor feeding, colic, reflux of food, constipation, or an underlying medical problem associated with the eyes, heart or kidney could all be contributory causes. One area which could be explored in consultation with your paediatrician is irritation of the brain due to the abnormal electrical activity. All suspect causes should be thoroughly investigated in order to keep your baby – and yourself contented.

Seizures / convulsions
Seizures are caused by extra electrical activity in the brain.
They may be mild and take the form of jitteriness or small jumps lasting seconds, and may do little more than startle the baby. They tend to happen more often when a baby is going into or coming out of sleep. Sometimes these mild seizures interfere with a baby’s feeding or sleeping.

During a more serious seizure your baby’s body becomes rigid and there will be jerky movements of her arms and legs. Seizures can be accompanied by apnoea. You will be taught the best way to look after your baby during a seizure. Your paediatrician may prescribe medication to control these jumps or seizures.

Sleeplessness
Frequently, babies with Patau’s Syndrome or Edwards’ Syndrome do not sleep well at night. Contributory causes could be: feeding problems, brain irritation, medical problems etc. Even if you have been told that your baby will not live very long it is worthwhile to seek medical advice to solve the problem. A good night’s sleep will help you give better quality care to your baby, and your baby will be more contented.

Never hesitate to seek medical advice should you become concerned about any aspect of your baby’s health. Advice may be sought from the Special Care Baby Unit at the hospital, your paediatrician, G.P., public health nurse or appropriate professional.

Activities for you and your baby

Babies with Patau’s Syndrome and Edwards’ Syndrome will not make the same mental or physical progress as a normal baby. Each baby is an individual and as parents you will feel happy and proud when your baby expresses her personality and makes small achievements.

As your baby develops, the hospital or community physiotherapist will advise you on appropriate exercises and activities to stimulate your baby. However, to begin with these simple activities may be enjoyable and beneficial for your baby:

  • When carrying your baby, check that her head is not buried in your chest or shoulder
  • Gentle manipulation will help loosen the baby’s clenched fists or thumbs
  • Gentle leg exercises will encourage her to have a bowel motion
  • Arm and leg exercises can improve the tone of the muscles
  • Your baby may enjoy kicking without a nappy on, or may move her arms or legs in the bath
  • As she gets older, she may like to sit up in a bouncer or special chair with her back well supported
  • Even if your baby has problems with sight, hearing etc., try to develop her five senses as much as possible. Concentrate on your baby’s own strengths so that she may experience life to the full
  • Smile at your baby and encourage eye contact
  • Hang mobiles or brightly coloured objects over your baby’s cot or in a position where she might see them
  • Talk to your baby and encourage other family members to do so
  • Your baby may enjoy nursery rhymes, songs or musical toys .
  • In Summer, weather permitting, take your baby out for a walk or into the garden. She may enjoy a gentle breeze, the sight of the flowers, the washing blowing, the singing of the birds or the smell of newly cut grass. Don’t forget the cat-net if you leave your baby in the pram.

Development of your baby

Many professionals tell parents that a diagnosis of Patau’s or Edward’s Syndrome means that their baby/child will never interact with their environment or that the condition is incompatible with life. While this is true in the majority of cases, it is not always the case and many surviving children do develop and make progress – albeit at slower rates than a normal child. According to a survey carried out in the United States in 1994, many babies with Patau’s and Edward’s Syndrome do the following before their first birthday:

  • Smile responsively
  • Hold up their head
  • Watch a toy or face
  • Reach for an object
  • Laugh out loud.

Before their second birthday many children:

  • Sit up with help
  • Sit up alone
  • Say consonant sounds
  • Roll over

In later years a few children cruise around the furniture or manage to walk with a walker. Although these children are severely developmentally delayed, they can achieve some of the skills of childhood and they can continue to learn.

Cleft lip and/or palate

A cleft lip is a gap in the lip where the tissue has failed to grow together. A cleft palate is a gap in the roof of the mouth and is often combined with a cleft lip.

Feeding your baby
Babies with a cleft lip and/ or palate find it difficult to create a seal between their mouth and nipple or bottle teat, and cannot suck properly. Sometimes liquids also come down through the nose. Special teats are available to help baby to suck more effectively. The nurses will advise you on the correct way to feed your baby and maintain oral hygiene.

Surgery
Some babies with Patau’s Syndrome or Edward’s Syndrome have undergone successful surgery for cleft lip and/or palate.
The situation should be evaluated carefully with the appropriate professionals. You may like to talk to a parent of a baby who made a decision to repair the cleft lip and/or palate.

The Cleft Lip and Palate Association can provide more information. See Useful Contacts.

Respite care
The role of taking care of your baby full time can be very demanding, both physically and emotionally. It is important therefore to take a break. Respite care gives you time to spend with your family and friends, time to rest and get a good night’s sleep. Following a break, you will welcome your baby back and feel refreshed and enthusiastic about caring for her again.

Do not feel guilty about leaving your baby for a few hours, overnight, a weekend or longer. Others will enjoy the opportunity to care for her, and she will have professional care both day and night.

Even if your baby is given a limited life expectancy or you do not feel the need to avail of any of these services, it is worthwhile to become aware of the respite care facilities in your area. Family events, holiday, time with your other children, or just simply time for yourself, make respite care very desirable. Having your baby admitted to residential care does not take away your rights as parents and you will be free to visit, phone, take your baby out etc. at any time.

Respite care may involve providing alternative family or institutional care for a person with a disability in order to enable the carer to take a short break, a holiday or a rest. It can cover very short-term respite, for example, a “babysitter” for an evening, or a much longer arrangement for a holiday.
Respite care or temporary care in Ireland may be based in the community or in an institution. In practice, respite care is provided to a varying degree at a number of locations around the country – in some cases by your Local Health Office and in others by voluntary organisations. To find out what is available in your area contact the Disability Services Manager in your Local Health office.

Respite Care Grant
The Respite Care Grant is an annual payment for carers who look after certain people in need of full-time care and attention. The payment is made regardless of the carer’s means but is subject to certain conditions. You do not need to apply for the Respite Care Grant as it will be paid automatically if you are getting Carer’s Allowance, Carer’s Benefit or Domiciliary Care Allowance.
You can apply for the Respite Care Grant by completing the application form RCG1and sending it to : Respite Care Grant Section, P.O Box 10085, Dublin 2.
See Website http://www.welfare.ie/publications/sw113.html

Entitlements

Republic of Ireland

Infant Care Services
The GP who attends the mother also provides care for the new-born baby. This entails two developmental exams during the first 6 weeks following the birth, that are free of charge. The baby’s entitlement to free GP services depends on whether the parents have a medical card. This means that visits to the GP for any conditions related to the baby’s health during this six week period or afterwards are not covered by the scheme unless the parents have a medical card.
The public health nurse visits the mother and baby at home during the first 6 weeks.

Charges in public hospitals
If you are in a public ward under the care of a consultant for treatment and you remain overnight, you are receiving in-patient services.
If you are admitted to the hospital under the care of a consultant where you do not require the use of a bed overnight and your discharge from hospital is planned, you are receiving day services.
The charge does not apply to the following groups:
medical card holders, children up to six weeks of age, children suffering from prescribed diseases and disabilities
In cases of excessive hardship, a health board may provide the service free of charge.

Community Health Services
Following the birth, your public health nurse will visit you and your child at home, usually within 48 hours of discharge from hospital and make other visits as necessary.
Public health nurses provide both general health and specific developmental advice to parents and monitor the development of the child.
A developmental examination is offered to every child by the Area Medical Officer at approximately 9 months, by appointment, in the local health centre. This examination covers all aspects of the child’s development, including hearing, sight, language development, physical development, etc, and is offered to infants irrespective of the family’s income.
Problems that are identified at this examination may be treated free of charge at out-patient hospital departments and any subsequent treatment is free as a public patient.
Most health boards offer additional doctor and public health nurse appointment clinics for those parents who have concerns about their child’s development.
http://www.citizensinformation.ie/categories/health/children-s-health

Medical Cards in Ireland
Persons are entitled to a medical card where they are unable, without undue hardship, to arrange for the provision of medical services for themselves or their dependents. In determining eligibility, the local health board.will have regard to the financial circumstances, and medical needs of the applicant. In this regard, income guidelines have been drawn up for health boards to assist in deciding a person’s eligibility. However, even in circumstances when your income exceeds the guidelines, you may be still eligible for a medical card if your baby requires excessive amount of medical services. In all cases, the decision is a matter for the Chief Executive Officer of the relevant health board. You should apply for this card as soon as posssible after the baby’s birth.

Persons who qualify for a medical card are entitled to:
Perscribed drugs and medicines free of charge
Free general medical practioner services, with a choice of doctor.
Hospital in-patient and out-patient services.
Free consultancy services.
The services of a social worker.
Dental, Optical and Oral services.
Aids and appliances for home use (oxygen, feeding tubes, suction machine etc).
These can usually be arranged through the hospital or your local Public Health Nurse.
Free Travel vouchers may be available to visit children with intellectual disabilty who are in residential centres or in hospital for comparatively long periods. Application should be be made to your local health board.
http://www.citizensinformation.ie/categories/health/entitlement-to-health-services

Community Drugs Scheme
Non-medical card holders and people with conditions not covered by the Long Term Illness Scheme can use the Drugs Payment Scheme. Under the scheme, no individual or family unit pays more than XX euro per calendar month towards the cost of approved prescribed medicines.
http://www.citizensinformation.ie/categories/health/entitlement-to-health-services

Domiciliary Care Allowance
The Domiciliary Care Allowance is a monthly means tested payment made to the carer of a child with a severe disability who lives at home.
The child must need substantially more constant care and attention than a child of the same age who does not have a disability.
Eligibility for the allowance is determined primarily by the degree of additional care and attention needed by the child rather than the type of disability involved, subject to the means test. Medical assessment is carried out by the Senior Area Medical Officer in the relevant health board.

Pro rata payment
Children who are being cared for on a full time basis in residential homes or other institutions are not eligible for the allowance. However, children in residential care who go home at weekends or holidays may receive a pro rata payment based on a per nightly rate (nightly rate is equal to the monthly rate multiplied by 12 and divided by 365). The allowance is continued in cases where children who normally live at home are absent for a period or periods of not more than 8 continuous weeks.

The means test
The means test applies only to the means of the child and not the means of the carer or carers. If the child has means above the level of the allowance, then no allowance is payable. If the child receives a compensation payment as a result of an accident or injury, this will be taken into account. Entitlement to child benefit is not affected and a person may also qualify for Carer’s Benefit or Carer’s Allowance if he/she meets the other conditions.
The person is also eligible for a Respite Care Grant, which is paid automatically each year during the month of June.
Your child may be entitled to free nappies at discretion of the health office.
Apply to your local health office.
http://www.citizensinformation.ie/categories/health/health-related-benefits-and-entitlements

Long-Term Illness Scheme
If you are suffering from one of a list of prescribed diseases or disabilities, includind mental handicap, you are entitled to the drugs, medicines and medical and surgical aids and appliances prescribed for that disease free of charge.
If your doctor certifies that you are suffering from one of these designated long-term illnesses or disabilities, you are given a prescription booklet that contains details of the type and quantity of drugs prescribed for you. The booklet also contains a number of detachable prescriptions. You may present this booklet to any pharmacist, who will supply the prescribed items. You do not have to use the same pharmacist all the time.
http://www.citizensinformation.ie/categories/health/health-related-benefits-and-entitlements

Bereavement Grant
A Bereavement Grant is a payment based on PRSI contributions which is payable on the death of a child under age 18. The Bereavement Grant is a once off payment.
The scheme replaces the former Death Grant Scheme.
Apply to Department of Social and Family Affairs (DFSCA or Social Welfare)
http://www.welfare.ie/schemes/bereaved/bereav.html

Supplementary Welfare Allowance
A weekly supplement may be paid towards special dietary or heating needs.
Apply to Department of Social and Family Affairs (DFSCA or Social Welfare)
http://www.welfare.ie/schemes/families/swa.html

Private Medical Insurance
If you have private medical insurance such as VHI, QUINN, VIVAS – your baby is automatically included in your policy. However inform them within a reasonable time of baby’s birth. If you choose private treatment, you will be liable for consultant and hospital fees.
http://www.vhi.ie
http://www.quinn-healthcare.com
http://www.vivashealth.ie

Incapacitated Child Tax Credit
Details of this special tax free allowance is available from your tax office or the inspector of taxes who deals with your tax affairs.
http://www.revenue.ie/

Medical Expenses
A tax refund is available for money spent on additional medical expenses not covered by long term illness scheme. Expenses include doctor’s bills, drugs, supply and repair of medical and surgical appliances used on medical advice and nursing home expenses. You should complete the special claim form MED 1 at the end of the tax year.
http://www.revenue.ie/

Home Improvement Grants
A grant may be given where an extra room or other structural changes are necessary for the accommodation of a child with disabilities.
Apply to your local health board
http://www.citizensinformation.ie/categories/housing/housing-grants-and-schemes

Payment for Disabled Passengers
Parents caring for a severely and permanently disabled child who buy or adapt a car for their use may be entitled to claim
Exemption from motor tax and vehicle registration tax
Refund of VAT
Refund of duty paid on petrol / diesel (subject to a maximum of 600 gallons per year.

Further information from
Disabled Drivers Section
Central Repayments Office
Office of the Revenue Commissioners
Coolshannagh
Co. Monaghan
Tel: 047 82800
http://www.citizensinformation.ie/categories/travel-and-recreation/transport-and-disability/tax_relief_for_disabled_drivers_and_disabled_passengers

The Disabled Drivers Association provides advise on aids and adaptation of cars.
Disabled Drivers Association
http://www.ddai.ie

Northern Ireland

Every baby/child gets complete free medical care until age of 16 years or after (depending on circumstances).

Everybody is allocated a Health Visitor after registering with a General Practioner. The Health Visitor introduces a Social Worker and gradually all other experts and professionals get involved e.g. Department of Education, Occupational Therapist, Physiotherapist.
Aids and equipment are supplied as needed.
For further information on your entitlements contact the Disability Living Allowance Branch and The Family Fund (U.K.)
http://www.dsdni.gov.uk/

For more information on “Entitlements” telephone

Department of Social & Family Affairs on
LoCall 1890 662244
Citizen’s Information Service on
LoCall 1890 777121
Contact your nearest
Social Welfare Local Office or
Citizen’s Information Centre

This information on entitlements is intended as a guide only and does not purport to be a legal interpretation.