Meeting the Needs of a Baby with Health and Developmental Issues
From New Beginnings, Vol. 26 No. 1, 2009, pp. 28-30
"Staying Home" is a regular feature of the magazine New Beginnings, published bimonthly by La Leche League International. In this column, suggestions are offered by readers of New Beginnings to help parents who choose to stay at home with their children. Various points of view are presented. Not all of the information may be pertinent to your family's life-style. This information is general in nature, and not intended to be advice, medical or otherwise.
Our family is reeling from the shock and adjustment to our dreams at the news that my baby will be born with serious health and developmental issues. We have many questions, among them, will we be able to care for her as we've cared for our previous children? Will she be able to breastfeed? Will we be able to meet her needs in our home? We would greatly appreciate any ideas other parents of challenged children would be willing to share with us.
The excitement of bringing home a new baby can be met with mixed feelings when a couple finds out that the baby will be born with health problems. You may be feeling worried, anxious, overwhelmed, and disappointed while at the same time happy that you will have a new baby in your arms very soon.
Many mothers of special needs babies find that being able to provide their baby with their milk is one of the most satisfying acts of love that only they can do for their baby. Preparation is the key to ensuring that your baby gets your milk whether it is from your breast or another way. Researching your baby's condition will help you determine if latching on will be possible. If it is not possible, then you will be able to work with the health care team to get your baby milk via pumping and/or using a supplemental nurser. It will be helpful to contact your local La Leche League Leader for support and up-to-date breastfeeding information pertaining to your baby's specific condition. Also, constant communication with the medical team about your plans to get your milk to your baby will be especially important. You may find it encouraging to seek out other mothers who have breastfed babies with the same condition (or other special needs).
Once the transition is made to home, feel free to continue using your La Leche League Leader for support. Delegating household tasks to close friends and family will allow you to focus solely on breastfeeding your newborn. Keeping a list of what needs to be done in the home is helpful when visitors ask, "What can I do to help?" Then, you can point to the list and let them choose between cooking a quick meal, doing dishes, or scrubbing toilets.
Soon you will be holding your new baby in your arms. Know that you will be doing your best in a difficult situation, and that the love you have for your baby as a mother is the best medicine of all!
Winfield, KS, USA
It is not easy to hear the news that your baby will have special health needs and developmental challenges. When the midwife told me that she thought our daughter had Down Syndrome, I remember thinking, "This is what it feels like when your heart breaks."
She was my beautiful daughter and I loved her fiercely, but I did not know how I was going to be her mother. Health care professionals, developmental specialists, and lactation consultants can help with the practical questions about feeding and caring for your child, and a La Leche League Group can be a wonderful source of support for breastfeeding and mothering. Just as important is meeting families of other children with special needs. The parents of a child just a year or two older than yours will have lots of parenting wisdom to share, along with practical advice and knowledge of programs and services in your community. There are parent support groups for many kinds of disabilities. Your health care provider may be able to refer you to a group, or you can search the Internet for information about support in your community, or for an online group.
The best piece of information I got during that first year came from another mother of a child with Down Syndrome who belonged to my church. She called to talk with me when my daughter was a few months old, and I asked her when things would start to get better. (What I really meant was when would I stop feeling so overwhelmed that I cried every day when I got in the shower.) She said, "The first year is the hardest" and assured me that I would feel better as the months went by. She was right. I tried to focus on what needed to be done from week to week and month to month, and by Eliza's first birthday I felt that we had come a long way, and I was happier and more confident about being her mom.
My daughter, Eliza, is 18 now. One of the best things about having her in our family has been all the wonderful people we have met because of her -- parents of other special needs children and teenagers, their dedicated teachers, and the children themselves.
I hesitated to respond since I have no personal experience with your specific situation. However, I'd like to share a bit about my co-Leader, Marcia, who does. Marcia and her husband, Allen, are the parents of three grown children. Their middle child is a daughter, Karen, age 31, who was born with spina bifida. I have had the privilege of knowing Marcia for almost 11 years now, and have been continually inspired by her dedication to her family, LLL, and Karen.
They have cared for Karen in their home since she was born. She was unable to breastfeed, but Marcia was determined to provide her with her milk. With routine pumping, she was able to do so for many months. She credits her ability to do so at least in part to the love and support she received from her friends in La Leche League. So if you haven't yet found a local Group, get to know them soon! And whether from friends at LLL or elsewhere, accept help when it's offered, and don't be afraid to ask for it -- many times people want to help, but don't know how.
Marcia has several wise sayings that she says she's picked up from La Leche League friends over the years, including "Family first," "People before things," and "Always be an advocate for your child." Her life is a demonstration of these priorities.
It is always hard to have to release a dream when reality is not what we planned. When your daughter is born, you will begin getting to know her and her unique needs, characteristics, and temperament. We all make this adjustment from "imagined baby" to "real baby" to a degree, each time a baby is born. May you find the strength, wisdom, and support you need to meet this extra challenge.
Cheryl Peachey Stoner
Hesston, KS, USA
Congratulations on the upcoming birth of your daughter! Having a prenatal diagnosis can give you time to prepare for her arrival and early needs. We found out after my second son was born that he has Down Syndrome. Once we had his diagnosis, we were better able to address his needs. The first and most important thing we learned is that a special needs child is a child first and has the primary needs that all children have: food, shelter, and love. We were certain we could meet those needs, just as we had with our first child.
Each child's special needs are unique, but most can be cared for primarily as you would any child. You should seek immediate assistance from an LLL Leader or lactation consultant to assist you in your goals of breastfeeding. They can help you with latch-on and feeding issues and, most importantly, offer the support and positive encouragement you may need. If your baby has health concerns that prohibit early breastfeeding, you can express your milk for feedings via other means and establish a milk supply until your baby is ready to nurse.
Due to low muscle tone caused by Down Syndrome, my son had difficulties nursing at first. I expressed my milk to feed him until he was able to breastfeed. Once he was able to do so, he continued on through infancy and follows his own path to weaning. Low muscle tone was also to blame for acid reflux, and babywearing, which we had done with our older child, was a wonderful solution for helping him keep his feeds down. We had to keep him upright after feedings, so sleep sharing while holding him in a reclined upright position was another way to meet his needs, maintain the family bonding we enjoyed, and get our rest. We absolutely have been able to parent him as we had our older child.
As my son has grown, our family has continued to grow and adapt to meet his needs. We have learned so much from him and our experience as his parents.
Hutchinson, KS, USA