April is HIE awareness month.
HIE stands for:
Hypoxic: lack of oxygen
Ischemic: restricting blood flow
Encephalopathy: affecting the brain
It affects about two to three in every 1,000 full-term births every year.
HIE can be caused by different issues including:
and can cause:
There are different stages of HIE: mild, moderate, or severe. Here is Abe’s story.
My pregnancy was uneventful and wonderful up until the very end. At week 36, I was diagnosed with Obstetric cholestasis which is a build-up of bile acids in the bloodstream that causes a persistent itch (it is not the same thing as PUPPS). The cure for obstetric cholestasis is delivery, which is recommended prior to 39 weeks (any longer and the risk of stillbirth goes up by a small percentage), so my induction was set for 38.5 weeks.
My induction was long, hard, and messy at the end. My body did not respond well to the pitocin and my contractions were very ineffective and painful. My first birth was pain medication free but this labor was much different and I begrudgingly got an epidural (it took 3 tries) at 8 cm. Abe was posterior or “sunny side up” . Pushing was over 2 hours, he had shoulder dystocia, and when he was finally born, after a vacuum extraction, his cord was wrapped around his neck. During the last 10 minutes of pushing, my contractions caused his heart rate to dip dangerously.
When Abe was born, he was wide awake and had a stunned expression. His limbs were floppy and he did not breathe on his own for several agonizing minutes. The NICU team had been watching my delivery and were waiting at the incubator when he was born. He was intubated and taken to the NICU for assessment.
The NICU team determined that Abe qualified for cooling treatment for his HIE. Cooling involves cooling the body down to around 33.5°C (92-93 ºF) for 72 hours. The treatment helps minimize further injury, especially brain damage caused by HIE. A good analogy is a “cooling baby is like a hibernating bear; the lower temperature slows the brain’s metabolism, halting the death of brain cells and helping to prevent swelling.”
Those were a very long and agonizing three days for my family. Abe was not able to eat or be held. He was naked and shivering, and could only be soothed by a pacifier, touch, sweet-ease, or if it was dire, morphine. I longed to pick him up and nurse him. Instead, I rubbed his forehead, sang, and prayed with him for long hours only leaving to pump, see my daughter, and eat/sleep.
I was discharged on the second day but, luckily, we were able to stay in the hospital in a boarder room. I was able to pump and bring milk over to the NICU. I’m pretty sure I filled most of their freezer by the time I left!
Finally after 3 days, Abe was slowly warmed up and we were finally able to hold and feed him on the fourth morning.
Abe stayed in the NICU for a couple more days after his treatment to make sure he was gaining weight. He also had an MRI to assess for brain damage. He had tiny, likely insignificant, areas on his brain due to his low oxygen. His prognosis is good and so far he is hitting all his milestones. The only continuing treatment for his HIE is to watch him developmentally. Only time will tell how, if at all, he is affected.
I’ve found several support groups and websites to help HIE parents and caretakers such as www.hopeforhie.org/.