Karuna is a Miracle Child
Karuna is a miracle child. When her mother's labor commenced, Karuna's umbilical cord tore open due to a velamentous insertion of the cord, in which the cord enters into the placenta at an angle and the umbilical veins and arteries go through the membranes exposed. These veins and arteries ripped open when her mother's membranes ruptured, a rare occurrence, causing Karuna to lose much of her blood. At birth by emergency C-Section, Karuna was clinically dead with no heartbeat and no respirations, but fortunately was revived after several minutes, placed on a ventilator, and given anti-seizure medication. After losing her blood, her brain and internal organs were deprived of oxygen (called hypoxic ischemic encephalopathy or HIE) and she suffered massive brain damage. She had several brain bleeds and many areas of diffuse neuronal death.
Unexpectedly, Karuna started moving and actually opened her eyes on her first day. The first time we talked to her she opened her eyes wide, recognizing and responding to her mother's voice. The next two weeks were very touchy, as she suffered kidney failure, liver injury, acidosis, and remained on a ventilator and then an oscillator. Eventually, with the help of daily blood transfusions, her internal organs healed up and she was able to come off of life support and even begin taking a few teaspoons of breastmilk through an NG tube. She stayed in the NICU for 33 days, coming home on an NG tube and slowly increasing her ability to move her body.
Developmentally, Karuna makes slow progress. She has severe cerebral palsy from her brain injury. Her optic nerves were badly damaged and her visual processing is poor, causing her to have very limited but steadily improving vision. She has extremely high tone in her arms and hamstrings, which makes it difficult to bend her arms, very hard to get her hands to her mouth, and impossible to straighten her legs. She has become progressively hypotonic in her trunk and has lost much of her head and trunk control recently. Karuna uses a wheelchair, a stander, a communicator, and a positioning chair.
At about 2.5 months of age Karuna started developing reflux, in addition to pyloric stenosis that was surgically corrected. For her entire first year, Karuna vomited 1-3 ounces of breastmilk as many as 20 times a day. Karuna had a G tube placed at 7 months, and now receives about 60% of her nutrition through her feeding tube, but is able to eat small amounts of purees, and is beginning to work on liquids and firmer textures. Although she still spits up about 10 times a day, she is only vomiting on average once a week.
Starting at about 8 months, Karuna began having seizures that are probably partial focal seizures, thought to be too deep in her brain to be picked up by an EEG. Although not dangerous, these seizures cause her to become irritable and dramatically affect her ability to sleep. Fortunately, we have been able to reduce her seizures from a high of 100 a day to about 10 a day, something that has helped her mood and development dramatically. Karuna still has very interrupted sleep and has a lot of trouble falling and staying asleep.
Karuna has thus far beat all the odds. She survived a birth injury that almost always causes stillbirth. She survived weeks on a ventilator struggling to breathe, kidney failure, liver injury, and brain bleeds. And she continues to fight through seizures and reflux.
Karuna will probably always have disabilities but has made incredible progress. We are very hopeful for her, especially since she is so alert, responsive, and sensitive. She loves movement and sounds, delights in looking in her mirror and at her fish, and absolutely adores music. Karuna has made enormous cognitive progress and doing many things a typical 2 year old would do, in a motor-adapted way. Everyday with Karuna is an incredible struggle but her loving touch and angelic face make it all worthwhile.
Karuna's best hope for living independently is stem cell research such as the kind supported by CNS, research that could help restore the brain function that was lost during her birth. There is very encouraging research being done by CNS scientists to help children like Karuna, but their work is underfunded, slowing progress for the millions of children who suffer from neurological disorders. Please help Karuna and other children like her by contributing or volunteering to CNS. For more information on Karuna, see her website:
http://www.karuna.agrawalkids.com
