Support Aiden, Nellie, and Baby's Medical Journey
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Hello everyone! My name is Rhea. I’m starting this to help my son Aiden and his fiancé Nellie and their baby boy who is due to come into the world on January 21, 2025. Aiden just turned 21 and Nellie is 22, and this is their first pregnancy.
At the baby’s 21-week ultrasound, we were told his brain is full of fluid, which can lead to many awful things, including death. We went to Maternal Fetal Medicine on October 1 and were told the baby also has a heart defect; two of the main arteries in his heart are reversed. He will need open-heart surgery soon after birth, and brain surgery to help with the fluid on his brain.
Thankfully, insurance will cover most of the medical expenses; however, there will be many appointments in Cincinnati and possibly Cleveland or U of M. They will also have to birth him at one of these three hospitals and will spend an extended amount of time in the hospital after birth. This means work and life are on hold. The cost to stay away so far from home, trips back and forth, and other occurrences is why I felt the need to create this fund to help them.
They are both so young, and scared, but are committed to doing everything they can to help their baby boy LIVE!
If you cannot donate, we appreciate as many PRAYERS as we can get! Thank you!!!!
The conditions the baby has that we know of at this time are:
1. Fetal ventriculomegaly refers to ventricular enlargement that is diagnosed prenatally. It is one of the most common fetal anomalies. The diagnosis is made by ultrasound when the arterial diameter of the ventricle is more than 10 mm. Once it is diagnosed, further evaluation by detailed ultrasound, fetal MRI, and genetic studies is required. Prenatal surgical management of fetal ventriculomegaly is still limited and associated with high risks. Postnatal management is similar to the treatment of other types of hydrocephalus. Fetal ventriculomegaly is a heterogeneous condition with various etiologies and a wide spectrum of neurodevelopmental outcomes. The outcomes depend mainly on the severity of ventriculomegaly and associated structural abnormalities.
AND:
2. Transposition of the great arteries (TGA) is a serious, rare heart problem in which the two main arteries leaving the heart are reversed. The condition is present at birth, which means it's a congenital heart defect. TGA always requires open heart surgery soon after birth.
Hello everyone. I’m coming here to update everyone on baby Zeke’S condition now that Mom and Dad are ready to share.
We learned a lot at the appointments and tests in Cincinnati. Unfortunately, none of it was good news
Through Genetic Testing between Aiden and Nellie and the amniocentesis, fetal mri and fetal echocardiogram- baby Zeke has been diagnosed with a RARE condition called Walker-Warburg Syndrome. I am going to post a link at the end of this post, for anyone who wants to read/learn more about this condition.
But, basically-
We are given 23 chromosomes from our Mother and 23 from our Father. We only need one of each specific chromosome to function normally. So, sometimes we have one gene here and there that has an abnormality, but because we also have one that’s fine we never are affected and never even know about this. In rare situations, The condition passes from both parents to a child during conception when both parents are carriers of one of the mutated genes that cause Walker-Warburg syndrome. This means Aiden and Nellie both have one mutation of the SAME
GENE. When both parents pass the gene onto their child, the condition is called autosomal recessive. This is what has happened for Aiden & Nellie and baby Zeke
On top of this condition he has a heart condition called Transportation of the Great Arteries. Transposition of the great arteries is a congenital heart condition that happens when the two main arteries going away from your heart are in the wrong places. For many babies with this condition, it affects blood oxygen levels and can be life-threatening without surgery to repair it. But with baby Zeke’s Walker Warburg Syndrome, it just isn’t going to help him to have this surgery. Walker Warburg Syndrome has a very low life expectancy rate, and baby Zeke’s has been diagnosed as SEVERE. They do not even expect him to make it very long after birth.
Our hearts are completely broken. And right now we need your help! Please share the go fund me, I am
About to update it with this information also.
Aiden and Nellie are going to be faced with funeral expenses and other issues, like bringing baby Zeke home to us from Cincinnati…
There is some light at the end of this dark tunnel, in the future they can use IVF to use embryos from Aiden and Nellie that do not carry the mutation. IVF can be very costly. If they get pregnant organically, there is a 1 out of 4 chance out of EACH pregnancy that it will happen again. So a 25% chance it’ll happen again, each pregnancy not using IVF.
Please help us help these two amazing young parents!!!!
Co-organizers (3)
Rhea Harris
Organizer
Delta, OH
Aiden Harris
Beneficiary
Nellie Miller
Co-organizer