Karuna is the epitome of the miracle child. After a normal pregnancy, my water broke at home in the middle of the night. But what came out was almost entirely blood, and a massive quantity of it. We thought that perhaps the placenta (which was on the low side) was causing the bleeding. We rushed to the hospital. Once at the hospital, the admitting nurses had difficulty finding a heartbeat. A quick ultrasound was performed and a very slow heartbeat was found. A code was called, and I was rushed to the OR for an emergency C-section. During the five minutes it took to get set up, Karuna completely lost her heartbeat. The last thing I remember is them beginning to cut just as I was put under general, knowing my baby had no heartbeat.
An hour later I woke up and found out that my darling's umbilical cord had ruptured. Basically, her cord was inserted into the placenta at an angle (velamentous insertion) and the veins and arteries went into the membranes. When my water broke, these veins and arteries tore open and all of Karuna's blood poured out. Karuna was clinically dead at birth with no heartbeat and no respirations. She was revived after several minutes, placed on a ventilator, and doped up with anti-seizure meds. 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 lots of areas of neuronal death.
Unexpectedly, Karuna started moving and actually opened her eyes on her first day. The first time I talked to her she opened her eyes wide up, recognizing my voice and responding to me. The next two weeks were somewhat touchy, as she suffered kidney failure, liver injury, acidosis, and remained on a ventilator and then an oscillator. She had daily blood transfusions. Eventually her internal organs healed up and she was able to come off of life support and even begin taking a few teaspoons of milk through an NG tube. She stayed in the NICU for 33 days, coming home on an NG tube, phenobarbital for seizure prevention, and increasing ability to both suck and move her body.
After about 10 days at home she began vomiting everything she ate. She would retch and vomit 10 times per feed. We finally figured out she had pyloric stenosis which was surgically corrected. Just a little blip for us...
At about 2.5 months of age she started developing reflux. She would vomit out her NG tube every day and vomit an ounce at each feed. We did the usual Zantac then Prevacid then back to Zantac then back to Prevacid sort of regimen. We finally got used to the puking and got her acid more or less under control. Unfortunately, continued oral aversion from her ventilator use, pyloric stenosis, NG, and reflux caused her to stop sucking except while asleep.
Karuna suffered with horrendous irritability from both her reflux and neurological issues. She cried 8 hours a day, every day, inconsolably until she was six months old. Between all the puking and crying I nearly went insane. She had to be held all the time, including for naps, and bounced up and down for hours on end. I now have a very strong back from so much bouncing! At six months she finally was able to lay on the floor for 15 minutes. At seven months I was finally able to take her to the grocery store for the first time. I basically had not been able to leave the house (except to go to the dr.) for seven months.
Developmentally, Karuna makes slow progress. She has severe cerebral palsy from her brain injury. Her vision is poor but steadily improving. She still has low tone in her head and trunk. She cannot bend her arms much, cannot get her hands to her mouth, and her legs cannot straighten. She receives botox treatments to help this high tone in her arms and legs. At one year of age she began vocalizing, and at 13.5 months she started to laugh and coo!
Karuna had a G tube placed at 7 months. A few days after surgery she began screaming all day incontrollably. Even though she was not vomiting more, we thought maybe she was having more reflux. We tried a G-J tube which she retched out after 3 hours. She woke up every 30 minutes at night and would scream as if she was in the worst pain for another 30 minutes until finally falling back to sleep. Valium made no difference...she would just scream in her sleep. This was for two months. I have no idea how I made it through those months, getting a maximum of 4 hours sleep in 30 minute chunks day after day and dealing with hours of crying. Eventually, we pursued the neurology route. Upping her seizure meds and adding a sedative finally let her sleep.
A month after surgery she started having actual seizures which are thought to be partial complex seizures. They are too deep in her brain to be picked up by an EEG. She was having 30-80 a day of short seizures and was becoming extremely irritable, crying at the top of her lungs inconsolably for an hour afterwards or at least becoming fussy.
Karuna's reflux has improved because she began eating solids by mouth after getting her G tube. Lately, we have finally been able to reduce her vomiting and retching using Levsin, a medicine to reduce irregular stomach spasms. I breastfed her by pumping for 13 months, one of the few things I have been able to do for her and something that I feel has vastly improved her health.
Karuna has thus far beat all the odds. She survived a birth that almost always causes stillbirth. She survived weeks on a ventilator struggling to breathe, kidney failure, and liver injury. She survived brain bleeds. She survived pyloric stenosis. And she continues to fight through seizures and reflux.
Karuna will always have disabilities but has made incredible progress. I am hopeful for her. She is alert, responsive, and sensitive. Everyday with Karuna is an incredible struggle but her loving touch and angelic face make it worthwhile.
UPDATE AT AGE 3:
In May, 2006, two months before Karuna's third birthday, Karuna developed an enterovirus with a high fever for seven days. Following this, she had an episode of severe pain, vomiting, and feeding intolerance that we now think was a mild episode of pancreatitis. She had a similar pattern occur a few days before her third birthday. This time the pancreatitis was much more severe and was diagnosed using blood tests. Since this time, Karuna has been unable to tolerate any feeds. She spent the summer in three hospitals and is now on 100% TPN (IV nutrition). Her stomach is drained for most of the day. She has a tube into her small intestine that is used for medication. She has a central line in her chest for IV nutrition and medication. Following her pancreatitis, she also had two episodes of Klebsiella sepsis, one of which was extremely life-threatening, due to bacteria translocating from her gut into her bloodstream.
In the past few months, Karuna has continued to develop odd and unexplainable symptoms. She gets very hypothermic at night (90F on her back), she has intermittent anemia and thrombocytopenia, recurrent infections, and she is often unable to pee, requiring cathing.
We are very uncertain of her prognosis at this time. Her gut is not functioning and it does not seem likely it will start to function any time soon. Her liver is holding up OK so far. She has a lot of pain that is decently controlled on four pain meds.
There is good news, however. Karuna continues to make some cognitive progress. She now uses the computer to play games using a switch attached to her wheelchair. She is clearly bright, and even able to match pictures visually on some days. She has also begun using a communicator called the Dynavox MightyMo. It allows her to scan through menus and phrases to say what she wants. Although she is just starting to learn how to do this, she has aleady made some remarkable progress, such as asking for a toy, telling me it was computer time, and saying I love you.