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Finding this organization was really a god send during a very trying time in my life. I am the kind of person who loves to know everything about everything and not knowing what this diagnosis meant for my son caused me to feel lost. I am grateful that finding this site helped me connect to other parents going through exactly what I was going through. As well as helping me understand what outcomes could come out of this traumatic experience. Hope is for the future, hope is for today. I've learned to be thankful for every milestone my son meets, when ever he meets them.

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Below is a picture of diagnosis, treatments, and could be prognosis of individuals with Cerebal Palsy. Children with Cerebral Palsy might not be diagnosed until the age of 3 years old.

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As like many other children affected by this diagnosis, my son stayed in the NICU. Jakob spent a lengthy 16 days before being released. The average time spent in the NICU ranges from individual child. Ten months later, he still is taking epilepsy medication and he receives physical therapy on a bi-weekly schedule. As well as going to a quarterly NICU follow up appointment where he is seen by OT and PT, Audiologist, Speech Therapist, Neonatologist, and the Neonatologist. He is also seen by a neurologist to keep up with his neurological development.

Below is a picture of Jakob at his last NICU follow up visit

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After the MRI was completed Jakob had to undergo a EEG which revealed he still had abnormal electrical activity which meant he would need to stay on Epilepsy medication for at least one year. Those medication were Phenobarbital and Keppra. As well of needing Albuteral in occasions of labored breathing. Due to the cooling causing his right lung to partially collapse. Diazepam is needed as a rescue medication for any seizures.

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One of the ways to see how much damage was caused by the injury is by doing a MRI with in the first 7 days of life.

This is a picture of Jakob while getting transported to get his MRI done.

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As noted on one source, there have been Two recent hypothermia trials provided updated information on mortality and the incidence of abnormal neurodevelopmental outcomes infants with moderate to severe hypoxic-ischemic encephalopathy.[24, 25] In these trials, 23-27% of infants died prior to discharge from the neonatal ICU (NICU), whereas the mortality rate at follow-up 18-22 months later was 37-38%. In these trials, neurodevelopmental outcomes at 18 months were as follows:

Mental development index (MDI): Scores of 85 or higher, 40%; 70-84, 21%; less than 70, 39%

Psychomotor development index (PDI): Scores of 85 or higher, 55%; 70-84, 10%; less than 70, 35-41%

Disabling cerebral palsy - 30%

Epilepsy - 16%

Blindness - 14-17%

Severe hearing impairment - 6%

Jakob is one of the children with a diagnosis of epilepsy as well as H.I.E. Many children in the HOPE for H.I.E support group online have also receive the diagnosis of Cerebal Palsy.

Below is a picture showing the electrical activity in the brain of a person with epilepsy vs brain waves of normal electrical impulses.

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My son Jakob was born with a true umbilical knot. Once born the NICU emergency staff came and had to resuscitate him. The whole process took about 10-15 minutes and three minutes to resuscitate, he was then taken away to the NICU before this picture was taken about one hour later.

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https://www.drugs.com/health-guide/absence-seizures-petit-mal-seizures.html

http://reachingforthestars.org/wp-content/uploads/2011/10/worldcpdaycpdiagnosisandtreatmentinfo.png

http://emedicine.medscape.com/article/973501-overview#a6

http://www.hopeforhie.org

Vega, Crystal. Jakob's Journey. Sept 7, 2015. Park Ridge, IL.

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As noted from the organizations website "Depending on certain criteria, therapeutic hypothermia, or cooling, has been shown to reduce death and disability in many cases. The cooling treatment is the most widely known and used treatment, but there are other treatments being trialed around the world. Cooling can be done on the whole body, or through a cooling cap placed on the head.  The baby may also need other medical intervention to support their organs or to treat seizures as they recover."

Below is a picture of Jakob being cooled during the first 72 hours of life. He could not be touched, soothed, or covered. The cooling dropped his body temperature to 33.5 Celsius to 34.5 Celsius. The reason for this is to slow down the damage of free radicals to the vital organs and brain.

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According to two sources, the average occurrence of H.I.E in live births range from 1-4  per 1,000.

Also noted on one source "HIE has many causes, including placental insufficiency, uterine rupture, placental abruption, true umbilical knots, cord compression, maternal blood clotting disorders, fetal maternal hemorrhage, extremely low maternal blood pressure, trauma during delivery, placental blood clots, shoulder dystocia, cord prolapse, aneurysm rupture, cardiac arrest and near SIDS events."

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Is a non for profit organization with the mission statement "dedicated to promoting awareness, education and support for HIE, worldwide, to fulfill our mission and vision serving communities affected by HIE.  No other formal organizations are focused on serving this community."
This organization is avalible online, as well as have multiple support groups for families new to the diagnosis or already years into the diagnosis. They also send out information packets to hospitals, doctors, nurses, etc. Although, this is something that can occur in medical settings few medical professionals are versed in the subject.

I found this source on google, after being discharged from the hospital and not knowing anything about my son's H.I.E diagnosis and being utterly distraught. Finding this group helped to come to understand my families situation and learn to take things day by day.