Parenting a Child with Special Needs: Diagnosis & Infancy
Hillary and daughter, Hadilynn
My daughter Hadilynn was diagnosed with spina bifida before birth, at her 20-week anatomy scan. Less than two weeks later we had surgery together. Hadilyn was partially removed from my womb so that a fetal surgeon could repair a defect on her spine, before carefully tucking her back inside until she was safely delivered at 36 weeks. Having surgery before birth allowed her to begin to heal while still in the womb. This operation is not meant to cure spina bifida, but it improves Hadilynn’s odds of walking, using the bathroom independently, and having higher cognitive function. In her first year of life she has already had several operations including a procedure on her hips, and the placement of a shunt to help drain excess fluid from her brain.
Caring for an infant is challenging enough without the added obstacles brought on by developmental concerns and multiple medical procedures. As a mom providing daily care, these are some tools and resources that I have found helpful while parenting a child with special needs during her first year of life.
Hydrocephalus: What to look for?
Hydrocephalus is the abnormal buildup of fluid in the brain. It is common in children with spina bifida as well as other conditions present in infancy, and following early/premature birth (babies born before 37 weeks). If your doctor is concerned about hydrocephalus you will want to watch your child closely for any of the following symptoms.
Changing in the appearance of the eyes including “sundowning,” which is when you see more of the white part of the eyes than usual.
Head swelling or bulging of a baby’s soft spot.
Excessive irritability, vomiting, and sleeplessness.
The best way to monitor for hydrocephalus is to keep up with the recommended schedule of visits to the doctor during the first year and beyond. At these appointments your doctor will listen to your concerns, examine your child, and measure their head for any abnormal growth concerns. This chart from the American Academy of Pediatrics shows a recommended schedule of appointments throughout childhood.
Limb Difference & other Mobility Impairments
Infants come with a lot of accessories and due to their almost constant growth, new clothing and supplies are always on the shopping list. Car seats, high chairs, and basic clothing items are generally standardized and one-size-fits-all. But children with medical conditions that impact their legs or arms may not fit into those standard sizes. Customized devices exist but may or may not be practical or affordable, especially for a child who is growing quickly. These tips may be helpful if your baby is sporting a brace, cast, or just shaped a bit differently.
Clothing - Adaptive clothing items have gone mainstream and are sold by many major retailers including Kohls, Amazon, Nike, Old Navy, Target and more. While many adaptive clothing solutions exist for infants, making a few small modifications to the clothing you buy can help save money in the long run.
Buy a size larger in clothing or opt for a stretchy material to help make dressing a child with a cast or brace a bit easier. If their cast is temporary they may be able to continue wearing the larger-sized clothes after it’s removed.
Shoes are not entirely necessary for any baby, and for babies with limb differences shoes may not even be an option. Instead of investing in shoes, stock up on socks to keep baby’s feet warm and clean.
For a baby in a cast or brace, consider skipping pants as well and instead opt for dresses or long shirts.
If you are in search of a ready-made solution for a particular need that your child may have, check out this parent guide from LifeZest, which lists 53 retailers who sell adaptive clothing.
Hygiene - Casts and braces can rub and dig into skin. Here are some tried and true methods for protecting sensitive baby skin, and some general hygiene tips.
Keep feet clean and moisturized when they are not casted or braced. Skin breakdown can be uncomfortable and lead to infection. Baby Aquaphor is great for moisture, and moleskin bandages (found in the wound care section of your local pharmacy), can help keep skin protected around rough brace and cast edges.
Use a hair washing basin or sink to wash your baby’s hair, and no-rinse soap to help keep their bodies clean. This will help keep non-removable casts from getting wet.
Hadilynn in her Dream on Me Stroller
Seats & Strollers - A variety of custom equipment exists for children with special needs, but these can be expensive and with limited quantities available they can take time to acquire. Modifying more widely available items can be a simple solution, just be sure to consider how a modification can change the item’s safety standards. Never modify or make changes to a car seat.
Car seats and strollers without sides are available from all major retailers. While there are many cast and brace friendly car seats, a simple seat without sides may be all your child needs (the Dream on Me Stroller and Diono car seat are my personal picks!).
Bean bag chairs and wedges provide support for play time, just be sure to stay with your child while using these items to ensure safety.
Families who have lived through similar challenges often have custom items to pass along for free or at a low cost. Online marketplaces and social media channels are a great place to connect with other families to receive and pass along gear you are no longer using. Please be careful when engaging with others on the internet, and be cautious to avoid a costly scam.
Developmental Milestones
With early intervention and the right support team in place, children with disabilities are achieving more and living with an ever-improving quality of life. Keeping track of how your child measures up with their peers can help you identify areas where more support and interventions are needed.
The CDC’s Milestones Tracking Tools include charts, checklists, and an app that you can download for free to your phone.
Additional Resources
If you are a new parent to a child who has special needs, the following Red Treehouse resource pathways may be especially helpful as you begin navigating your new parenting role.
Written By: Hillary Heaton, RedTreehouse.org Content Contributor.