There are the ‘facts,’ and then there’s the reality. The file says HIE, Hypoxic Ischemic Encephalopathy, but what does it really mean?
Brain damage that occurs when an infant’s brain doesn’t receive enough oxygen and blood, either immediately before, during or after birth, is commonly called HIE.
But our Creator fashioned our brain in such an astounding way that it is possible for an infant’s brain to take on the functions of the damaged tissue!
The length of time the brain is deprived of oxygen determines the severity of the impairment, and the spectrum for HIE effects is broad, as most infants with mild symptoms will have a life uninhibited by HIE, while others with severe symptoms may face many developmental obstacles and even a shortened life span. Some effects of HIE may include motor skill development delays, epilepsy, cognitive delays, neurological delays, vision impairment, and cardiac issues.
But, take the miraculous brain fashioned by a loving Father, add the nurture and love of a family, and the result is phenomenal!
Once your child is home, she may be re-diagnosed with cerebral palsy. Though the true severity of HIE may not be determined until the child reaches the age of three or four, it is typically not progressive.
While these are some of the ‘facts,’ our family is joyfully living the reality! Our daughter, Khloie, came home at age two, diagnosed with HIE, Strabismus and a CHD of atrial septal defect. We had images of her brain, and reports that were pretty daunting, but we knew she was our daughter, no matter what.
When Khloie was placed in our arms, we were told she couldn’t speak. And she didn’t. But within a matter of weeks, we knew she understood what we were saying, and she began to jabber.
Once home, we needed an MRI to determine the condition of her brain and to know how to best help her progress, but first she had to be cleared by the cardiologist. Finally, we would need to see the ophthalmologist to determine if her vision was impaired.
As a new patient, it takes time to get in to pediatric specialists. We had appointments scheduled for a few months out, but as the Lord would have it, in a single week we received calls that bumped us up immediately.
First, the cardiologist looked at Khloie’s reports and images from China which clearly indicated ASD, and after conducting several tests, determined it no longer existed! Khloie was cleared for a sedated MRI.
Our neurologist confirmed that over 30 percent of Khloie’s brain had been damaged by an event such as a stroke. She concluded that it likely occurred in utero and that the healthy part of her brain took over the functions typically performed by the area that was damaged. She told us that if she had seen the images without seeing the toddler in her office, she would presume Khloie couldn’t speak, see, hear or walk. Thank You, Father, that You are bigger!
The ophthalmologist found that Khloie’s vision was perfect, and he could align her eyes with surgery to tighten the ocular muscles.
Khloie has now been home two years, and as I look back, I am amazed at her progress. Though she still experiences some delays, she’s catching up rapidly. She can understand what is spoken to her and respond appropriately, verbally. Her motor skills such as stepping, climbing, balancing and jumping continue to improve.
Some of the things we have noticed and are mindful of:
– She is hesitant when changing surfaces (carpet to tile, etc), approaching steps and obstacles. Her depth perception may not be fully developed, but we are hopeful, with the encouragement of her ophthalmologist, this will continue to improve.
– Her body temperature can be extreme. When outside in the heat, she gets very hot very quickly, and in the cold, she gets extremely cold. According to her neurologist, this may be a result of her special brain, and we need to be her ‘thermometer’ until she’s old enough to judge for herself.
– Khloie had an unexplained seizure a few months ago, lasting 15 minutes, which led us back to the neurologist. This could have been brought on by the stress of my absence while her daddy was hospitalized, or it could have been a febrile seizure, but nevertheless, children with HIE are at higher risk for seizures and epilepsy. The MRI showed no changes in her brain, and since it’s an isolated incident, rather than prescribing a daily anti-seizure medication, the neurologist prescribed a medication that can be given at the onset of a seizure. This medication stops the seizure for up to eight hours, giving us time to get to the hospital. I’m happy to say we haven’t had to use it!
The joy that Khloie brings to our family is indescribable. She has such a sweet spirit and a ton of personality. She is empathetic, silly, tenderhearted and energetic.
When the Lord placed adoption on our hearts once again, we specifically requested to adopt another child with HIE. Less than two weeks ago we arrived home with our newest treasure, Kohlby Zane!
We are still cocooning and haven’t begun the medical journey yet, but what we have observed is that Kohlby was remarkably delayed at age 13 months, but his development began to blossom once he left the orphanage and went to a foster mama who loved him like crazy for more than a year.
Until it is tapped into, we can never know the true potential and beauty of a precious child with HIE, much like an unopened gift.
Despite the facts, we serve a Father who gives peace beyond understanding, and a reality that exceeds all our expectations!
– guest post by Connie
Thank you for posting this! We are in the process of bringing home our daughter with “possible HIE” as her diagnosis since she is showing cognitive delays (reaction is slower and she doesn’t speak much nor eat solid food at 33 months old). Her gross motor skills are on target. Anyway, we know there are many unknowns but God is bigger and I love the way you said “Until it is tapped into, we can never know the true potential and beauty of a precious child with HIE, much like an unopened gift.” Oh so perfectly what we feel in our heats. Thank you , this was beautiful and hit home.
Rebecca, I’m so excited that you’re in the process to bring home your daughter! You are so right that although there are many unknowns, GOD is bigger! May He bless the union with you precious daughter.