As your child grows up, you take pride in seeing them reach important milestones — from crawling and walking to speaking. Part of seeing your child grow is physical as much as it is mental. But what happens if your child doesn’t seem to be growing at the same rate physically as other children? Are they getting enough nutrients or is a rare genetic disorder — such as Jeune syndrome — to blame?
What is Jeune syndrome?
Jeune syndrome, also called asphyxiating thoracic dystrophy, is a rare genetic disorder that causes a small chest and ribcage. Jeune syndrome is considered a form of congenital dwarfism and only impacts one in every 100,000 to 130,000 babies. The biggest risk for children with this condition is breathing problems. This can become life-threatening if there isn’t enough room in the chest for the lungs to develop properly or to expand fully during breathing.
Symptoms of Jeune Syndrome
Congenital dwarfism isn’t the only cause of a child not growing at the same rate as their peers. There are many other medical conditions and causes that can stunt growth. Signs of Jeune syndrome include:
- Narrow chest
- Short ribs
- Shortened bones in the arms and legs
- Short stature
- Extra fingers and toes
- Unusually shaped collarbone and pelvic bone
- Cone-shaped ends of the arm and leg bones
- Severe breathing problems
- High blood pressure
- Liver disease
- Pancreatic cysts
- Dental abnormalities
- Retinal dystrophy
Treatment for Pediatric Jeune Syndrome
Jeune syndrome may be detected before a child is born through ultrasound imaging or genetic testing, but more often it’s diagnosed after a child is born through X-rays. Once diagnosed, the treatment will depend on the severity of the condition. If your child needs breathing support, then treatment may include intubation or a tracheostomy.
In severe cases, your child’s medical team may suggest vertical expandable prosthetic titanium rib (VEPTR) surgery. During this surgery, one or more expandable titanium rods are attached to your child’s ribs near the spine. This creates space in your child’s chest for the lungs to develop fully. As your child grows, you’ll need to take them to the doctor to get these rods adjusted. This is done every four to six months until they have finished growing.
Caring for a Child with Jeune Syndrome
If your child has Jeune syndrome, then the most important thing you can do to care for them is to keep track of their doctor appointments and communicate with their medical team. In some cases, respiratory problems may ease with time — with some children growing out of them after age two. However, some children may need lifelong ventilator support. As such, there may be daily maintenance to ensure they’re getting the air they need for lung function. This includes cleaning trach tubes and other maintenance.
You don’t have to do all this alone though. Getting support from family and friends can give you time you need to run errands, care for other children in your home, or just take some me-time. If you’re looking for trained professionals to care for your child overnight, then a home healthcare provider may be a better fit. They’ll monitor your child while they sleep to ensure they’re getting the oxygen they need, and you’ll be able to get a full night’s rest knowing your child is in capable hands.
Contact Care Options for Kids For Pediatric Home Health Care
It can be hard to balance your time between work, home, and caring for a child. That’s why our team of skilled professionals at Care Options for Kids is here to help.
Our home health care services offer support in the comfort of your home. We refer loving and competent nurses to provide customized care for families — from a few hours a day to around-the-clock supervision. Contact us directly to speak with a home health care professional or request a free in-home assessment. Together we can determine the best plan of action to keep your loved ones happy and healthy.
If you are considering pediatric home health care services, contact the caring staff at Care Options for Kids. Call today at (888) 592-5855.
