Do babies born with dwarfism need to stay in hospital longer?
Yes. The length of stay in the NICU depends on the complications that can go along with dwarfism.
Hydrocephalus is the buildup of fluid in the cavities (ventricles) deep within the brain. The excess fluid increases the size of the ventricles and puts pressure on the brain.
Breathing, heart rate, and feeding will all be monitored. X-rays will be done and a specialist will diagnose the baby with a particular type of dwarfism. The baby will receive oxygen and maybe a feeding tube. The parents will be given information on the type of dwarfism their baby has, referrals for support, and hopefully be introduced to Little People of America. (www.lpaonline.org) Many hospitals have reading libraries that the parents or a family member could benefit from. Parents should also receive training in infant CPR. When I had my son, the hospital even trained me to handle the breathing alarm and CPAP machine. I stayed in a room at the hospital where nurses watched for 12 hours overnight to make sure I did everything correctly. I appreciated that.
The hospital also connecting me with clinicians who obtained rental, or free lending of a car bed, (it takes the place of a car seat), a CPAP for home, and prosthetics for breast feeding, (since his mouth was so tiny). They were also there to answer questions about breastfeeding. Later these same clinicians will help with a larger car bed if needed, and how to install a carseat properly. (See below)
They also found information about holding my baby, newborn babies with dwarfism are “floppy babies” meaning their muscles are weak. (Physical therapy in a few months will help with that). It is super important to support not only their head, but all over because the muscles cannot support the weight of the head yet. Their little bodies will just kind of flop which can damage their brain stem or spinal cord. Even baby carriers or propping them up in infancy is dangerous and can cause orthopedic problems.
I would like to add that many hospitals have a room for mom or family to stay while their child is in NICU, so that mom can breastfeed, and family can stay near. It may even be needed to transfer to a hospital that has knowledge of care for newborns with dwarfism. However, Little People of America has a medical board with THE BEST doctors who specialize in dwarfism. They can help you and consult with the staff at the hospital. Parents can take a breath and feel that their baby is safe.
CAR SEATS and CAR BEDS
“Based on recommendations from the National Highway Traffic Safety Administration, the researchers found these mistakes:
- 86 percent of families positioned the newborn incorrectly in the seat.
- 77 percent incorrectly installed the seat.
- More than a third positioned the harness retainer clip too low.
- 69 percent of babies had a loose harness.
- Two out of 5seats had an incorrect recline angle.
- A third used the incorrect harness slot.
- One in 5families installed a non-regulated seat.
- 44 percent of seats moved more than 1inch side to side.
- Half of the seats that used seat belts did not have the seat belt retractor locked.
- About a third had lower anchors that were too loosely attached.
- Many used the incorrect seat belt path.
- Many also incorrectly used lower anchors in the middle seat.
- 11 percent had twisted straps, which can decrease straps’ effectiveness in restraining a child in a crash.