The Down Syndrome Diagnosis What to Expect after Delivery

It may not be the path you envisioned, but knowing what to expect will give you the confidence to parent a child with Down syndrome

Receiving a prenatal Down syndrome diagnosis can feel overwhelming. While most expectant parents worry about which breast pump to use and which diapers to buy, you will concentrate on what to expect when caring for a baby with Down syndrome.

First, repeat the Boy Scout motto,”Be Prepared,” to yourself about 10 to 20 times. This should become your family’s go-to saying and your key to gliding through the early months. Being prepared and knowing what to expect will give you the confidence you’ll need to parent a child with Down syndrome more easily.

First Appearances

Have you ever held a baby with Down syndrome before? If not, you have a lot to look forward to! Spending time with one of these little cherubs is such a special experience. According to the National Down Syndrome Society, babies with Down syndrome often share a specific and differentiated set of physical characteristics, which include:

  • Almond-shaped eyes
  • Small noses
  • A round face with a slightly flat profile
  • Hyperextending joints
  • Muscle tone deficiency
  • Larger gap in between the big toe and second toe
  • A deep line down the center of the palm

Breast is best!

You may already know that breastfeeding can naturally improve your baby’s immune system, but it is especially important to infants with Down syndrome, who have higher rates of infections and respiratory disorders, such as asthma. According to the National Down Syndrome Society, breastfeeding can also help a baby with Downs by:

  • Increasing muscle tone in the mouth and jaw that can later improve speech
  • Increasing the development of neural connections in the brain by exposing the baby to skin-to-skin contact
  • Improving digestion to help your baby’s body absorb more nutrients; Down syndrome babies generally experience bowel problems

Keep in mind, because babies with Down syndrome have low muscle tone, they may have extra difficulty latching on to the breast. They are also known to be sleepier than other babies, so you will need to work harder to keep your baby awake through an entire feeding.

Your Baby’s Health

The National Down Syndrome Society says babies with Down syndrome have an increased risk for having certain health conditions, so the sooner you can locate the right doctors and therapists, the better it will be for your child’s well-being. Health issues commonly associated with Down syndrome include respiratory difficulties, heart defects, digestive issues, hearing loss and vision problems. Not every child born with Down syndrome with have these health concerns, but if your baby does, seek out pediatric specialists who primarily work with children who have Down syndrome because they truly understand the condition. For example, pediatric physical therapists or sensory integration specialists can work with your child from the earliest months to help improve muscle tone, increase flexibility and decrease overstimulation that can often agitate children with sensory issues.

But what about the future?

People with Down syndrome have a greater quality of life and a longer life expectancy now, more than ever before in history. They can live fulfilled lives rich in social experiences, successful careers and even marriages. You will find, as most parents do, that your child will fill your life with compassion, patience, humor and more joy than you could ever imagine.

Some of my most special memories as a child were spending time with my Aunt Gina. Gina has Down syndrome, and although she’s about 20 years older than I am, we had quite a lot in common when I was a little girl. We both loved Barbie dolls and dressing up like princesses, which we would do for hours every time my family got together. As I got older, I eventually grew out of playing with Barbies and dressing up, but at more than 50 years of age, my Aunt Gina still loves to throw on her feather boa, toss on her bejeweled tiara and grace everyone in the room with her royal presence.

Growing up with Aunt Gina in my life was nothing short of a blessing. Sure, there were times when she would become frustrated or upset. But when I was a child, I had the rare and precious opportunity to watch everyone around me demonstrate a type of tenderness and patience with Gina that really showcased the beauty of the human spirit. Aunt Gina taught everyone in our family the meaning of compassion, self-sacrifice, loyalty and joy. So, if you’ve just found out that your baby will have Down syndrome, know that you and your family have been given a beautiful gift. Although you might have a different path than most parents, you will find that your journey will expand your heart in ways that you never imagined, and it will fill your life with immeasurable love and countless cherished memories.

To help you find your path, visit The National Down Syndrome Society’s website to find support or read advice from Dr. Sears about his personal experience raising a child with Down syndrome.

Eating tips for children babies

ccccBabies grow quickly in the first year of life, so they need plenty of energy (kilo joules) and nutrients. A child’s growth isn’t always steady and even, which means that appetite and hunger can be unpredictable.

The amounts of foods eaten by your baby and their interest in food may be a little different from day to day. This is normal and shouldn’t cause any concerns if your baby is growing well.

Introduce solids at about six months of age

Breast milk is an important food for babies until at least 12 months of age, or longer if the mum and baby desire. Infant formula is important until 12 months. By about six months of age, a baby’s iron stores are low and extra foods will be needed to maintain healthy growth and prevent nutritional problems such as iron deficiency. Start to introduce solids around six months of age – when your baby starts showing interest in food.

Clues that your baby is ready for solids

When your baby starts to need the nutrients that solid food can provide, there will be obvious signs they are ready to try solid foods. These include:

  • Good head control and able to sit up with support
  • Watching and leaning forwards when food is around
  • Reaching out to grab food or spoons to put in their mouth
  • Opening their mouth when food is offered.

    Physical readiness for solids

    Your baby’s organs and body grow and develop certain physical traits between four and six months. This indicates that their body is ready physically for solids. This maturing process includes:

    • Digestive system – digestive enzymes that help to digest food are developed.
    • Immune system – immune gut defense mechanism is fully developed.
    • Mouth and tongue – your baby is able to move food to the back of their mouth and swallow safely.
    • Head and neck – your baby is able to hold their head up; head control helps them to sit up straight and swallow.
    • Kidneys – your baby’s kidneys can now handle the increased load produced by solids.

      Starting solids too early can cause problems

      Hungry babies should be offered more breast or formula feeds until they are ready for solids. Some parents want to try solids early, believing this may help baby grow, sleep or settle better. Giving solids too early rarely helps these problems and may lead to other difficulties including:

      • Poor growth, if the solid food replaces breast milk or formula
      • Loose bowel actions or diarrhea, if the baby cannot digest the food.

Don’t leave starting solids too lateIt’s

also important that starting solids is not left too late, as this may lead to problems including:

  • Poor growth due to low energy intake
  • Iron deficiency anemia
  • Feeding problems, particularly if not started before about seven to nine months of age.

    Signs that your baby is not interested

    Signs that your baby is not interested or is full may include closing the mouth tightly and turning the head away when offered food. They may cry when the food is offered or may push the spoon away. If this happens at your first attempts to feed your baby, relax and try again in a few days. While most babies naturally spit food out when first given solids, they soon learn to accept foods if you continue.

    Getting to know when your baby is hungry or full is important to having happy, relaxed and enjoyable mealtimes.

  • Tips for introducing solids

    • Be calm and relaxed when you start to feed your baby.
    • Make sure your child is sitting comfortably and is not too hungry.
    • Be patient. Your baby may only take a spoonful at first, but this will increase with time and practice.
    • Be prepared – all babies will make a mess as they learn to eat.
    • Stay with your child while eating to avoid accidents such as choking.
    • Try again in a day or so if your baby refuses the first time.
    • Wait several days before introducing a new food
    • Offer foods on a small, infant-sized spoon.

      Suggested first foods

      First foods can be prepared easily and cheaply at home without salt, seasonings and sweeteners. The foods should at first be mashed and smooth, but you can quickly move on to coarsely mashed foods and coarser textures. General suggestions include:

      • Start with a single food rather than a mixture.
      • Offer infant cereal first as it is fortified with iron and makes an ideal first food. Mix with expressed breast milk or formula to a smooth texture.
      • Otherwise, there is no particular order for foods:
      • Give vegetables and fruits, introduce meats, or chicken, and ‘finger foods’ such as toast..
      • Always sit with your baby while they are eating.
      • Encourage drinking water from a cup.

        Later feeding skills – from 8 to 9 months

        While a baby’s first solids should be mashed and smooth, they soon need variety in the texture as well as the type of food. Other suggestions include:

        • Give finger foods, such as pieces of cooked vegetables and crusts, to encourage chewing and self-feeding.
        • Give baby a small spoon to encourage self-feeding, even while you continue to give most of the food.
        • Progress from food that is pureed to food that is mashed then chopped into small pieces.

        By the end of 12 months, your baby should be ready to eat a wide variety of family food.

        • Offer more variety of fruit, vegetables, meats, chicken and well-cooked fish
        • Introduce pasta, rice and bread
        • Small amounts of cows milk on cereals, as custard, cheese and yogurt. The main milk for babies less than 12 months should be breast milk or infant formula. However, it’s okay to introduce and use cows milk as part of custard, yogurt and on cereal from seven to eight months of age.

        Stay with your baby when they are eating. Let them sit with the family to watch and learn.

        At around nine months your baby will develop other feeding skills. These include:

        • Showing an interest in self-feeding
        • Ability to chew lumps in food
        • Independent eating with some assistance.

        Always avoid small hard foods, such as nuts and hard uncooked vegetables, because babies might choke. Fruit juice is not suitable for babies.

        Introducing cows milk

        Suggestions include:

        • Cows milk is a poor source of iron and is never a substitute for breast milk or formula for babies under 12 months. Continue breastfeeding or using infant formula until your baby is at least one year old.
        • Cows milk contains higher levels of protein, salt, potassium and calcium than breast milk or formula. This can increase the load on the kidneys.
        • Cows milk may be included from about eight months in small amounts as custard or yoghurt or on cereal.
        • Milk should not be the main drink until after one year of age or until a range of food is eaten each day, including meat or meat alternatives.

          Allergy and vegetarianism

          There are issues to consider when you introduce solids to your baby, especially if your baby has shown signs of allergies or your family eats a vegetarian diet.

          • Allergy – if there is a strong history of allergy in your family, seek advice from your doctor or maternal and child health nurse.
          • Vegetarians – your baby may need extra nutrients if fed on a vegetarian diet. Seek advice from your doctor or maternal and child health nurse.

Unsuitable foods

Some foods are not suitable for babies under 12 months. These include:

  • Honey – there is a potential risk of bacterial infection from honey.
  • Tea – contains tannins that can restrict vitamin uptake.
  • Whole nuts – should be avoided due to the risk of choking.
  • Fruit juice – contains no nutritional benefit and can reduce the amount of milk consumed.
  • Reduced fat milk – is not suitable for children under two.

Sticked

Tips for Your First Trimester

OK, now that you’ve calmed down some from the initial excitement, wiped out the pregnancy shelf at your local bookstore, and made a down payment on a new maternity wardrobe, it’s time to focus on the most important thing here (and no, it’s not the wallpaper pattern for the nursery): your health and the baby’s health. Your first assignment: Pick up the phone and call your doctor, nurse practitioner, or midwife—whomever you plan to see throughout your pregnancy and delivery—and make an appointment. It’s time to begin prenatal care.

HOW ARE YOU FEELING? 4 Weeks Pregnant Symptoms

Studies find that babies of mothers who don’t get prenatal care are three times more likely to have a low birth weight and five times more likely to die than babies born to mothers who do get care. Need any better reason?

The First Visit and Beyond

In a normal pregnancy, you will see your health care professional every month until about the sixth month; then every two weeks during the seventh and eighth months, and then weekly until labor.

During the first visit, your health care professional will take a full health history, including a history of any previous pregnancies. You will also receive a full physical exam, including a pelvic exam and Pap test in most cases, and will be weighed and measured and have your blood pressure taken. Your health care provider should also test for any sexually transmitted infections. You will get a due date, officially called the “estimated date of delivery,” typically 266 days from the first day of your last period if you have regular menstrual cycles. Otherwise it is customary to assign the due date based on ultrasound.

During every future visit, you will be weighed, have your belly measured and blood pressure taken, have your urine tested for protein or sugar (signs of potential complications), and, most exciting, hear your baby’s heart beat.

Prenatal Tests

Near the end of your first trimester and early in the second trimester, your health care professional will talk with you about a variety of prenatal tests to assess the health of the fetus. It’s up to you which ones you have done. For instance, if you have no intention of terminating the pregnancy if the tests do find a problem, you may want to skip them. However, even then, you may want to have the test so you can prepare yourself emotionally for the possibility of having a special-needs child.

Who and When to Tell

Although you may want to send an e-mail to everyone in your address book, post to your Facebook account and shout your pregnancy from the proverbial rooftops, we urge you to relax and take a deep breath.

The first three months are the most common time for miscarriage; so give the baby time to get settled. Plus, you need time to adjust to the news, to discuss options with your partner (Keep working? Work part-time? Quit your job?) and decide how to break the news to your employer, if you’re employed.

If you work for a company that employs 50 or more people for at least 20 weeks a year, you are covered by the Family and Medical Leave Act. The act requires that your employer provide up to 12 weeks of unpaid leave during any 12-month period for the birth and care of a newborn child. When you return, you are entitled to your same job or the equivalent.

In addition, most states require that employers offer the same disability leave (and pay) to pregnant women as to employees with other medical conditions that interfere with their ability to work. Thus, many women find that their first six weeks of leave are often paid.

However, every company is different. The only way to know what goes on in your company is to talk to your human resource department or your manager/employer—after your first trimester.

“Preparing for “The Talk”

Make a list of questions regarding benefits and maternity leave to discuss with your employer after your first trimester. Also, develop a plan for how your job will be handled while you’re out on maternity leave and for your post-pregnancy employment. The more on top of things you are, the better things will go with your manager/employer

First Trimester Issues

So how are you feeling? If you’re like most women, the answer is exhausted and nauseous. Let’s deal with the fatigue first. Do you have any idea what your body is doing right now? It is building a home that can nourish and protect that baby for the next nine months—that is, the placenta. This is really hard work. It takes a lot of energy—your energy. So stop being superwoman for once and listen to what your body is telling you. That means:

  • Napping on the weekends and when you get home from work
  • Slowing down at work if possible.
  • Putting your feet up as much as possible.
  • Turning over housework, cooking, errands, etc., to your partner, friend or a professional agency—or just letting things go for a while.

Don’t worry; in your second and much of your third trimesters, you’ll have energy to burn.

Now, about that nausea: They call it morning sickness, but for many women it lasts all day. You may never throw up—just feel like you’re occasionally (or continually) seasick—or you may throw up every morning as soon as your feet hit the floor. Don’t worry. This is normal. There is even some evidence that the nausea is nature’s way of protecting the baby from potentially harmful foods.

Most morning sickness disappears by the end of the first trimester. Until then:

  • Eat small meals throughout the day so you’re never too full or too hungry.
  • Avoid rich, spicy, greasy or fatty foods, and foods whose smells bother you.
  • Eat more carbohydrates (plain baked potato, white rice or dry toast).
  • Eat bland foods when you feel nauseous (saltine crackers, gelatin desserts, popsicles, chicken broth, ginger ale and pretzels). Keep some crackers by your bed and eat one before you get up.
  • Use acupressure wristbands.
  • Take additional vitamin B6 (25 mg three times a day), which some studies find can help with nausea.

If your prenatal vitamins make your nausea worse, talk to your health care provider about prescribing a vitamin without iron.

Pregnant Women Ask…
I’m nine weeks pregnant, and I can’t keep anything down. Should I worry?

Some women experience a severe form of morning sickness called hyperemesis gravidarum. If you experience any of the following, you may have more than just “morning sickness” and should call your health care professional:

  • You have lost more than two pounds
  • You vomit blood (which can appear bright red or black)
  • You have vomited more than four times in one day
  • You have not been able to keep fluids down for more than one day

Eating Right throughout PregnancyYou know you’re supposed to follow a “healthy” diet during pregnancy (think lots of fruit and veggies, low-fat forms of protein, high fiber, etc). But do you know why? Beyond the obvious—maintaining enough calories to keep you healthy and ensure the baby keeps growing—we’re learning that in-utero nutrition, including whether the mother is overweight or has pregnancy-related diabetes, can impact a child’s health throughout his life