Hope For Harlow

Hope For Harlow was created to help pay for all things Harlow, as well as helping the disabled community by doing pay it forwards and helping those who are less fortunate and need extra love! The two set out to create a life together. Finally after trying to conceive a baby for 4 years they were blessed with a pregnancy. At 20 weeks pregnant in the middle of an anatomy scan something out of the or

dinary was spotted. The first thought from doctors was hydrocephalus. To be sure the doctors performed an amniocentesis and explained to Katie and Bobby the severity of the diagnosis. They even spoke about abortion if Harlow in fact had a severe case. There are many degrees of Hydrophalus. Hydrocephalus is a condition in which there is an abnormal accumulation of cerebrospinal fluid within the brain. There was a great possibility that the fluid on the brain could drain by itself and doctors hoped this would be the case. The couple was left waiting for answers. What was truly going on with their baby girl? After a horrifying scare the tests performed came back positive for Hydrophalus yet Harlow was clear for any abnormal growth on the brain, cysts, tumors and infections. Still hopeful, doctors wished the diagnosis of Hydrophalus would clear itself. Completely overjoyed by the news the couple celebrated the small moments. Given the scare the couple was made high risk. On October 22nd at 6:49 am precious Harlow was born not breathing. There was no skin to skin or bonding time with her mother, she was taken directly to the NICU. Multiple tests were performed once Harlow suffered from 3 seizures within hours of being born. Her diagnosis is:
Lissencephaly, microcephaly, hydrocephalus and epilepsy. In other words, she has an underdeveloped brain that is smooth due to incomplete growth. Harlow is partially blind in both eyes and we are unsure at this point how well she hears. Given the combo of her diagnosis Harlow is 1 in 11 million. An everyday life in this household consists of multiple doctor visits and therapies. Katie has not been able to work and needs help getting in touch with the correct people to be Harlow's paid family caretaker. Based on Harlow's diagnoses she will forever need around the clock care. Statistics say she will never walk, talk or eat on her own. As a matter of fact doctors have stated Harlow should have died at birth. They say she should have stopped developing mentally at 3 months and will die due to aspiration at around 10 years of age. Daily Harlow cries a lot, and is very particular about how she is held due to the acid reflux that comes with Lissencephaly. To manage her seizures, she is on Ketogenic diet and phenobarbital seizure medication. This was their first family session and it meant so much to them to do something normal. Katie has expressed to me most days she tries to remain hopeful about her daughter's diagnosis but it can be very difficult. I asked her how she manages and she said, “Bobby and I are a good team. It's different daily. Some days it won't even phase me something is wrong with her, she's my daughter and I love her just the same. Other days my postpartum creeps up and I can't be around her. It got so bad right after she was born. I would sit outside the NICU because I couldn't go in or I would puke after seeing her. It was devastating, I just wanted her to be OK and take her home. "
Harlow is a precious living miracle. Although doctors believe Harlow will never achieve expected milestones she is alive despite the odds. We will continue to Pray for and believe in miracles for this courageous family.