Having a child with Down syndrome is a blessing. Our angels are special and even celebrate their own day on the 23rd of this month. Bringing up a child with an extra special chromosome is however not without challenges. In this article we are going to look at how best to care for your infant and child, as well as touching base with some facts and statistics.
Down Syndrome: What to Expect from Birth Onwards
We all know that our infant has a triplicate chromosome 21, leading to variable physical expression. But, let’s dig a little deeper. Your infant is likely to also have congenital cardiac defects, duodenal atresia, and transient myelodysplasia. Infants with Down syndrome are also far more likely to suffer from congenital cataracts, leukemoid reaction, dental problems, and otitis media. Feeding and respiratory problems are also common. So, correct immunization, and a high level of home care are extremely important. As around 1 in every 95 births results in Down syndrome, you will never be far from a family physician with knowledge and experience, ready to welcome your child.
Although Down syndrome can be diagnosed before birth, diagnosis at birth from physical features is the most common. Karyotyping of you infant can provide you with some closure. It will also allow you to move swiftly on to learn how to care for your infant at home, and throughout all the stages of their development. Congenital heart defects are present in up to 60% of infants with Down syndrome. It is therefore vital to gain a diagnosis at birth, so your child can be referred to a pediatric cardiologist for medical management.
With a myriad of problems possible, it is important to have the support of a medical physician who is adequately trained and knowledgeable in Down syndrome. Your infant may also suffer from endocrine disorders, and will be at greater risk of developing leukemia. Seizures also occur in between 5 and 10 percent of children.
HOME CARE FOR YOUR CHILD:
1. FEEDING YOUR INFANT
It is incredibly important to bond with your infant, there being no better way than by breast feeding. The good news here is that breast milk is easier to digest than formula. Breast fed infants also suffer from fewer lower respiratory infections and a lower incidence of otitis media. Breast feeding your infant with Down syndrome will improve oral motor development, the foundation for speech later in life. Bonding in this way with your infant is extremely important, especially if you are feeling inadequate as a mother after the diagnosis.
Don’t be discouraged by sucking problems; these could be due to cardiac defects and are more common if your infant was born premature. Support is available, and you shouldn’t give up. You may find that your infant’s sucking ability improves after the first few weeks. Your child should follow the same diet as a child without Down syndrome. You may however have to delay solids as your infant will be later developing teeth. A lot of patience will be required when teaching your child to drink from a cup or eat with a spoon; but with time your child will reach these goals!
2. MAINTAINING GOOD HEALTH
Due to possible structural anomalies to the upper respiratory tract, ears, and nose, proper immunizations are extremely important. Your child should receive all the standard immunizations such as tetanus and diphtheria. Hepatitis B vaccine should also be started at birth, your child being at a higher risk of developing the illness. Yearly flu jabs are also recommended, as these reduce the risk of otitis media.
3. MEETING MILESTONES
It extremely important to take your child to all her development assessments; all facets of development will be assessed. These include cognitive abilities, social and adaptive skills, and fine motor skills. Ensure a prompt referral; support is there for you, given by professionals with decades of experience working with infants and children with Down syndrome.
Wherever possible, don’t isolate your child. Don’t be afraid of stares and don’t keep your child at home. Enroll your child in a preschool program for children with special needs. These schools will help with speech and educational therapy and are also a great way to meet other moms and dads with children with Downs. A preschool with specialist services can provide the foundation for mainstream schooling your child later on. Early intervention will profoundly improve the academic prognosis of your child. Although some children with Down syndrome have profoundly low IQS, others have been reported to have IQs of 135 to 140!
4. PSYCHOSOCIAL ISSUES
There are several common reactions to the news that your infant has Down syndrome. These range from denial, anger and grief, to shock and acceptance. Or indeed, a combination of all of these is possible. From day one, your child should be referred to using his name. If you haven’t chosen a name, now is the time to do so. Include your infant in all family activities, and do not treat him differently in any way to your other children, if you have any, or to a healthy infant born without a chromosomal abnormality.
Medical problems should be discussed openly with you, such as gastrointestinal anomalies and heart defects. At this stage it can be beneficial to meet with parents of an older child with Down syndrome. Bonding will be discussed at this point, and the importance of it. The first few weeks are crucial, and it is in this time that you will become comfortable with caring for a child with special needs. Strategies for the future should be put in place at this stage, including who will care for your child when you return to work. You may also need to apply for supplemental security income assistance.
Having a child with Down syndrome should not be any different than having a child born with all the correct chromosomes. You need to play with her and love her in the same way. Your child will have the same emotions as an average child. He will enjoy playing and learning, albeit at his own place. Allow your child to have positive experiences with other people. Be proud of your child, show him off to everyone, and let him interact with other children too.
As your child grows, you will need to pay special attention to her intellectual and physical development. Your child will most likely have some health problems that need extra care. Feeding issues can be challenging, but remember that you are not alone. The probability of heart defects is quite high; so ensure your child is regularly checked out by your pediatric specialist and cardiologist where necessary. Hearing and vision problems may also be present. Once again, regular checkups will ensure that all that can be done to help your child develop is being done.
Your child will reach his milestones. It will just take him that little bit longer. So, when he does, it will be even more special. Professional academic support is vital, as is occupational and physical therapy. This will ensure motor and language skills are developed. The earlier your baby starts therapy, the brighter her future will be. Lastly, if you feel alone, there is no need to. With support groups in all major cities and parents like you in every town, reach out, and share the love you have for your extra special children!