Hope for Elizabeth

First, the good news: Due to early genetic testing, we found out we’re expecting a little girl, named Elizabeth Hope.

Next, the difficult news:  At our 20-week anatomy scan, we received some difficult diagnoses and referrals for more testing. At the ultrasound, we were told that Elizabeth had a ventricular septal defect, also known as a hole in the heart. We were also told she had severe hydrocephalus and ventriculomegaly which is excess cerebral spinal fluid in her head and enlarged ventricles which were preventing her brain from developing normally. The doctor also told us that even though they couldn't get good pictures of her spine, she suspected Elizabeth also had spina bifida due to the presence of these other conditions. She referred for an amniocentesis the next day. At the amnio, they did another ultrasound for better pictures of her head and back and were able to see an opening in her back where it should be closed (spina bifida) as well as something called Chiari malformation which is where the cerebellum is herniated into the spinal column. Within a couple of weeks, we received the amnio results, confirming the diagnosis of spina bifida and ruling out any genetic causes.

Now, the uplifting news:  Last week, we did a follow-up echocardiogram to get a better idea of the heart defect and the cardiologist was unable to see any problems. The hole in her heart had healed in just 2 weeks! Usually, to treat spina bifida, surgery is performed within 72 hours of birth to repair the opening in her back as well as a shunt being placed in her brain to drain the excess fluid and treat the hydrocephalus. Due to the normal results on the echocardiogram, we are candidates for a surgery that is performed *before* the baby is born to reduce the damage to the spinal cord and nerves that occurs in-utero. The sooner the injury can be repaired, the less damage is done over time and the better the long-term outlook is for mobility and brain development. Our neurosurgeon here in Portland has referred us to Children's Hospital Colorado for this special surgery and we will be heading there this weekend. The doctors in Colorado will perform some extra testing to get a better picture of what's going on with Elizabeth and verify that we can proceed with the surgery. The surgery is scheduled for Friday, August 17th. We will be in Colorado for another 2 weeks after the surgery so the doctors can keep an eye on Elizabeth and me and make sure that we are healing well. After that, we will come home to continue recovery and wait for our beautiful girl to make her entrance into this world.

We really appreciate your thoughts and prayers for our new journey in life. I will most likely be unable to return to work after the surgery and most likely I don't qualify to work from home (per my employer's policies). I have some medical leave and vacation time that will help cover our expenses over the next several months, but it will definitely be tough. We have started this campaign to help offset the gaps in my paid time off from work, help cover our travel for the surgery, and plan for medical supplies that Elizabeth may need once she’s here with us.

 

Thank you, and God bless!