Prayers and help for Baby Kenya

Hi friends and family,

I'm sorry to those I have been out of touch with in these past few weeks.  For those who do not already know, we had a very traumatic birth experience here in the DR as the doctors made some poor medical decisions and we have been trying to recover from this experience.  Obviously this post will not be a part of Kenya's baby book we are making, but rather we wanted to inform people about what is going on and ask for your help.

This past Saturday night, Kenya began having seizures during the night. We suspected she was having seizures before this but we were not sure.  We went into the ER Saturday night in Santiago but waited for 10 hours without seeing a doctor and they wouldn't take us seriously, saying that she was just making "facial gestures" and refusing to check her.  So we left Santiago and went to Santo Domingo, the capital, where Dave's brother Tim and his family live and they have been helping us find people to see Kenya.  On Monday she saw a ped. neurologist, general neur., and pediatrician, who all confirmed that she was having seizures and said they believe it was from the trauma during birth.  We ordered some tests to get done the next day and the neur. asked us to stay up during the night tracking and timing her seizures.  She had 2 seizures in a row Monday night that lasted more than 20 minutes each and the neur. said this was a medical emergency and to get her into the ER in Santo Domingo.  They put her in the NICU for the next 34 hours which made those the worst 34 hours of our lives (if you can imagine what it's like to leave your baby in a NICU already, try to imagine the hell of leaving your baby in an NICU in a developing country).  They put her on 5 medications which left her as a completely different baby, all drugged up, extremely sedated and unhappy.  This has been killing us to see her like this.  Kenya went through a bunch of tests including cranial ultrasound, cranial MRI, an EEG, blood tests, hypoglicemia, etc. on Tuesday and Wednesday.  We also had a test sent to the states to test for metabolic and congenital causes of epilepsy and are waiting for those results. 

The tests from the MRI and EEG came back to confirm she has generalized secondary neonatal seizures.  They believe this is related to the trauma that occurred during birth.  Finally they released her from the NICU and sent her home on Keppra anti-seizure medication and told us she would need to take this med for a minimum of the next 5 years.  They make her extremely sedated and unhappy, and she has no muscle tone.  We are checking all the time just to make sure she is still breathing.  It breaks our heart because we feel like she is like an entirely different baby.  She also continued to have seizures even with this medication.  We called the doctor last night and she doubled her dose of this med last night.  So even though the med. is not recommended for infants under 1 month, and a baby of her weight should be taking approx. 40 milligrams a day, Kenya is taking 200 milligrams a day - 5 times the recommended dose for her weight.  We were told not to worry about the side effects right now of what this is doing to her, but just try to get the seizures under control because the seizures are what is most dangerous to her right now.  But the worst part is that even on all this medication, she is continuing to have seizures and had them throughout last night and this morning.  We don't know what to do.

Dave and I have been praying and praying and praying for Baby Kenya.  We don't know what else to do at this point to help her.  We have never been so scared or discouraged in our lives.  We keep praying that at some point we will wake up and realize this was all a bad dream. 

We are trying to declare medical emergency so we can speed up her passport and somehow get her to the states.  We don't have health insurance for her in the states so we are trying to find hospitals that offer free children's healthcare.  We have been recommended Shriner's Children's Hospital in Memphis, Tennessee but would love to hear more ideas and suggestions from anyone who has them.  We are afraid applying to get on Medicaid would take too long. 

We are seeking advice and suggestions from anyone who knows anything about epilepsy in children and what we can do.  Dave and I are staying up around the clock to monitor, time, and record her seizures but we have a lot of questions about whether we are doing this correctly.  If you know about seizures and are able to help us with this, please let us know.  If you have contacts with any ped. neurologists in the states we can talk to, we would be thankful to have a contact like this.

We are not seeking your sympathy with this situation but rather just ask for tons of prayer for Kenya and for our family.  Dave and I are really run down and struggling.  I had severe damage from the implications of the birth and it has gotten a lot worse and infected as I have been pushing myself this last week to help Kenya.  I will probably need to get surgery to repair this sometime in the future.  Dave is sick with what may be some kind of parasite and is really run down.  Thankfully we are staying with his brother Tim and his family who live in the capital and they are taking good care of all of us.  For the time being, we are going to stay here in the capital where Kenya has access to better medical care and we do not know when we will return to Jarabacoa at this time.

Please understand that we do not have time to respond to personal emails and phone calls at this time, unless they are medically related.  We need to put all our time right now into helping Kenya get her seizures under control and getting her the best healthcare possible. 

Also, if you feel led to make a financial donation to help with Kenya's medical expenses, please let us know.  We have already maxed out all of her health insurance that is covered under my insurance plan, and need to get her on a new plan for the rest of her time here.  In the meantime, medical expenses are coming out of pocket and neither of us are able to work at this time.  If you feel led to help us out with these expenses, please let us know.

Thank you for your prayers and help.  We are grateful to know we have so much support in our friends and family in all different places around the world, and that we have your love and prayers.  Please continue to pray for Baby Kenya.

Love,
Dave, Kristin, and Baby Kenya