We received our first indication that something was wrong at our 20-week, routine ultrasound. We were told that Valerie had 4 markers for a possible chromosomal abnormality and eventually were recommended to receive more testing at Children’s Hospital.
We had a fetal MRI, ultrasound and echocardiogram at Children’s on August 9th. Our day concluded with a “team meeting”. We entered a conference room with just shy of a dozen people, most of them around a table with two chairs open. “Take a seat”, they said, “and don’t be intimidated”. Our team consisted of: a pediatric surgeon, a perinatal doctor, a neonatal doctor, a social worker, a genetic counselor, a nephrologist, a cardiologist, and a radiologist. The neurologist was absent, but talked to us over the phone later. Each doctor took a turn stating what they had seen on their various tests.
Essentially, Valerie would have a lot of hurdles to overcome in order to survive:
- At birth, the most immediate issue will be her severely underdeveloped lungs. They told us we simply can’t tell if they work until Valerie tries to use them in air.
- After that, her kidneys are incredibly enlarged and polycystic. They may or may not be functioning well or at all.
- Next, she has a coarctation of the aorta in her heart, which would require medication rather quickly, and need surgery within the first week of birth.
- Her brain will most likely cause her to be experiencing ongoing seizures, though probably not the visible shaking kind. It was clear from the MRI that her neuron pathways are not forming correctly throughout the brain, which would cause the seizures as well as severe mental and physical impairment.
- She may or may not have an issue with her liver as well.
- They do not have a best guess at what underlying genetic or chromosomal issue caused all of these problems, so can only give us symptoms.
Each of these is a serious issue on its own, but more severe because these different organs rely on each other. We’ve decided to deliver at Children’s to provide her with her best chance of survival, but still need to navigate what intervention options to try. We have a planning meeting on September 6th to discuss further with the doctors. They are hoping she makes it to 37 weeks, to give a chance for the lungs to grow, even though it seems space is limited due to the kidneys and heart.
Currently, Caye-An is being monitored twice a week. Her amniotic fluid has been slowly decreasing, and they are concerned that her amniotic fluid levels could drop to dangerous levels, in which case they will have to induce immediately. They are also checking to make sure Valerie’s kidneys and heart are functioning.
The most difficult thing we’ve had to do is tell Gianna and Elise. We tried to explain simply and clearly that Valerie isn’t growing right, and her organs aren’t growing right. We told them that her organs might not work when she is born, which means she might die. They both understand what that means and were very sad. We told them God’s will is best, and if she does die, we will have someone very special to pray to in heaven. But, we are praying for a miracle of healing, and that she will live.
One of the most common questions people ask me is, “how is Caye-An doing?” The good news is that physically, she just feels 32 weeks pregnant. She is still keeping busy, and you will still see her playing for the church. She is happy to hear people say they are praying for her and Valerie.
The other common question we are asked is, “how can we help?” The support has been overwhelming. Thank you for all of the support. The real answer to the question “what can we do” is “we don’t know”. We don’t know what we need or when we will need it. We will keep you all updated.
The one thing we do know we need your prayers. We are blessed to have so many wonderful people praying for us. Pray that we might trust God’s will, even if we don’t always know it. We’ve received a prayer blanket from the parish and have many people praying for Valerie. Caye-An’s mother began a novena for the intercession of Venerable Fulton J. Sheen. You can read/ join that novena here: http://www.praymorenovenas.com/fulton-sheen-novena/
Hopefully, our next update will not be until after September 6th when we talk to the doctors again for our planning meeting. Someone recommended this webpage as a good way to keep everyone updated. I am still happy to talk to anyone who would like an update or more details or anything.
Keep us in your prayers,