We know there are people out there who think we are over protective of Cora. Hopefully, by reading this page, you will have a better understanding of what issues Cora has and that we are not overprotective, but that we are at the right protective level for Cora's situation. We don't expect everyone to fully understand all that we go through, but we would like people to understand why we parent the way we do and that almost all decisions we make are in Cora's best interest.
One thing that should be noted, which isn't discussed below, is Cora's appointments. Paula takes Cora to 2 physical therapy appointments each week. Couple this with the Pediatric, Urological, Neurological, and Orthopedic appointments she has, Cora's schedule fills up quickly. Not to mention all that needs to be done at home; exercises, standing, feeding, napping, etc. All in all, Cora and Paula's days are pretty busy, which doesn't leave much time for them to just play and enjoy each other.
Spina Bifida - Myelomeningocele
Cora was born with myelomeningocele, the most severe form of Spina Bifida. Spina Bifida is a neural tube defect, affecting the lower part of her spine. Cora's case is mild, since it's fairly low on her back, but not as low as possible. In general, with Spina Bifida, the lower the better.
The cause of Spina Bifida is unknown. Some experts say it's hereditary, some say different environmental factors, yet others say not enough folic acid. Paula was on a prenatal vitamin for 10 months before she became pregnant. It is also said that your baby's spine is already formed before you find out that you are pregnant. Therefore, if your baby has Spina Bifida he/she already has it when you find out you are pregnant.
Within the first month after conception, Cora's spine hadn't formed properly and left an opening. This caused the spinal cord and nerves to stick out her back through the opening. While in the womb, Cora had a meningocele sac which held the spinal cord and nerves. This sac somewhat protected the spinal cord, even though being inside the womb was pretty good protection. This sac was a big part of Paula having a c-section. We did not want the sac or Cora's back to become ruptured during a vaginal birth.
After the c-section, Cora was taken to the Neonatal Intensive Care Unit (NICU) where she stayed for less than a week. During this time, actually within the first 14 hours after birth, she had surgery to close the opening in her back. After that she was monitored by nurses and had a few scans and x-rays, among other things for the remainder of the stay.
Spina Bifida affects nerves at and below the open in the spine. This means that every function below the opening in Cora's spine can be affected. In her case, she has very limited feeling in her feet. Her legs, below her knees, are also affected but time will tell how much. Paula and I are very confident that Cora will walk someday. It will take a little longer and she will need some assistance, i.e. braces, crutches, etc., but we feel she will be able to walk. (As of the writing of this, February, 2010, she scoots backward very well.)
Hydrocephalus
Quite often, in people with Spina Bifida, hydrocephalus occurs. Hydrocephalus is excess spinal fluid in the brain, hydro - fluid, cephalus - head. Cora had a shunt placed about a week after she was born. A shunt is a small device that regulates the flow of her spinal fluid from her head to her stomach. Her shunt can last forever and we hope it does. But sometimes, maybe from hard hits to her head, the shunt tract getting kinked, getting too close to magnets, or any number of things, the shunt can malfunction. If this happens, Cora would need to go in right away and get a shunt revision, or put simply, a shunt repair or replacement.
The shunt is a very important device for Cora, in fact, probably the most important. The reason it is so important to get her shunt taken care of if it malfunctions, is because of the problems that can occur. Untreated hydrocephalus can cause severe brain damage with physical and mental retardation.
We now see the Neurosurgeon once a year to get an MRI to make sure the pressure hasn't changed. Her neurosurgeon can change her shunt with a magnet so that the fluid flows faster or slower depending on the pressure in her head. Her shunt is currently set at 1.5. It can be set anywhere from 0.5 to 3.0. This is why it is important for her to stay away from magnets. We wouldn't want her shunt to change because of a magnet changing it.
Bilateral Clubfoot
The most noticeable issue with Cora when she was born was her clubfoot. When she was born, her feet were turned in quite a bit. With the help of her orthopedic surgeon and the Ponseti Method of casting, Cora's feet look great. Cora's clubfeet were most likely the result of her Spina Bifida not allowing the muscles, bones and tendons to form properly.
About 2 weeks after her birth, we met with Cora's orthopedic surgeon who suggested we get her started on the Ponseti method. The Ponseti method of casting consists of a series of plaster casts, in Cora's case, the casts were put on weekly. She had these on for several weeks and at the end she had tendon lengthening surgery because her heel wasn't quite in the correct position.
After the casts and surgery, Cora was fitted for AFO's, Ankle-Foot Orthosis. The AFO's keep her feet in the proper position so they don't go back to the way they were.
Bilateral Hip Dysplasia
Hip dysplasia is a condition in which the hip joint is dislocated from the from the socket. Cora's case is fairly mild, and, if we're understanding her orthopedic surgeon correctly, her hips seem to be forming properly into the socket. She may need surgery in the future to correct this, but as of right now the surgeon sees no need for it. The main issue with this is trying to find pants that fit her properly.
Urological Issues
Since Spina Bifida affects the nerves at and below the opening in the spinal cord, Cora has issues with urological function. She voids urine just like any child her age but we're not sure if she has full control of her bladder. A big issue is Urinary Tract Infections (UTI).
The 2 main components of the urinary tract are the bladder and kidneys and the main problem with UTI's is the infected urine making its way to the kidneys. We want to prevent this, so, surgery may come into play in the future. But a medication called ditropan is also a possibility. Cora was put on this medication for a little time but had some obviously bad effects, so we hope we will not need this medication. Ditropan helps to relax the bladder so as to help keep the urine from entering the kidneys. As of right now her kidneys look great and we, with the medicine, are trying to keep them that way.
Since birth, Cora has been on some sort of antibiotic to combat the UTI's. Some seem to work well, some not and others just make her sick. This is something she may have to be on for the rest of her life. As of February 2010 her last UTI was back in November.
Chiari II Malformation
This is the condition we know the least about because it has the least affect on Cora. All people with Spina Bifida have this condition, but the severity varies greatly. From what we understand, with kids, swallowing is affected. Cora has a slight difficulty swallowing, but it doesn't seem to concern her neurosurgeon. Other problems can occur as she progresses, but since she shows no big signs of the issue, she may not have any other problems.