Words Megan Embry, Patrick McGee and big sister Presley Embry have had to live by for the last 14 weeks. Megan is 34 weeks pregnant with her 2nd daughter and Patrick's 1st, Lainey.
On May 17th, Megan and Patrick found out there may be some problems with their baby. On May 2nd she had been referred by her OB to a perinatologist for a more in depth ultrasound. They were not prepared for what they learned that day. It was shocking and heartbreaking to hear they couldn't detect the baby's cerebellum. That same day she had to undergo an amniocentesis to do chromosomal testing. The doctors wanted to see if they could get a handle on what they were dealing with. After what seemed an eternity, the perinatologist office called a couple of weeks later to say all the pairs of chromosomes were normal. They said they were going to have each individual chromosome tested. All came back normal. There were also no neural tube defects.
In the meantime, Megan had an MRI on May 31st, her birthday, to let the doctors have a clearer view of Lainey's brain. She got a call later in the week and was told Lainey's cerebellum was there, just pretty far down in the base of her skull. We were all ecstatic for some positive news. It was still agonizing for Megan and Patrick with no clear answers on what was going on with their precious baby. The next few weeks were long until she had more appointments. They were hoping each time for answers and the doctors had none. They were stumped. As parents you want to know why, what will happen, will she be able to live a normal life, will she have disabilities? The doctors could give them no answers.
With each subsequent perinatal appointment, Megan had an ultrasound. Each time they still could not detect Lainey's cerebellum using ultrasound.
At Megan's July 20th appointment the sonographer and perinatologist seemed unusually quiet. We left with no new information. That afternoon the perinatologist office called and asked her to come for a 2nd MRI the next day. That Friday Megan had a longer than usual MRI but after speaking with her doctor, felt everything was the same.
The following week (after doctors got time to consult), Megan received a phone call from the perinatologist on Tuesday the 25th of July, wanting us all to meet with a team of doctors to make a plan of action. The cerebellum had shifted and was even lower in the base of Lainey's skull. There was a significant concern that her cerebellum was pressing on her brainstem and would pose problems upon delivery. They told her they would likely deliver her at 38 weeks by C-Section.
The team of doctors meeting was on the 2nd of August. We found out in this meeting that little Miss Lainey's cerebellum is situated very low in her skull and protrudes down the spinal column to her C2 vertebrae. The neurologist is very concerned about the pressure the brain may be causing on Lainey's brainstem. The problem can cause Lainey not to breathe on her own when she is born. It can also cause her heart not to beat normally on its own and can even impair her ability to suck. The doctors have no name for this brain anomaly. It is so uncommon that this team of doctors have never seen this. There is no literature on this specific brain anomaly without presentation of other relatable issues. Because of this circumstance, Lainey will be delivered by C-section on September 6th with a team of doctors there and waiting to see what will need to be done for her. There is a definite possibility she will need brain surgery.
As if all of that is not upsetting enough, Megan and Patrick were told during this meeting that they discovered another problem little Lainey will have to face when she is born. She has a Diaphragmatic Hernia. This is a rare birth defect and in Lainey's case, her diaphragm is very weak and is causing her liver to push up on her right lung. The hernia is already a rare defect but Lainey has made it even more rare. Most generally these hernias occur on the left side. Lainey's is on the right. This hernia can cause a multitude of problems for her and is a high risk surgery that is even higher of a risk with the added brain anomaly. It has to be done, there is no alternative. The typical recovery time for this surgery with no other issues or complications is 6-12 weeks .
With the hernia alone, Megan, Patrick, Presley and Lainey are looking at a long NICU stay. If she has to have brain surgery for the brain anomaly, the stay could be significantly longer.
With all of the appointments and testing Megan and Lainey have gone through in the last 14 weeks and the upcoming weekly appointments, the medical bills are mounting quickly. As you can imagine, the upcoming expenses will add up just as quickly. Insurance, although helpful, will not begin to cover it all.
Megan and Patrick had chosen, up to now, to keep this as private as possible. They needed time to try to deal with and absorb the changes and stress their lives are about to experience.
They know they need help and have agreed to let us post their story in hopes of helping them. They have been strong in the face of this heartbreaking and tough journey and their faith is strong. They are preparing for the next weeks and months ahead. As the team of doctors have said, "Hoping for the best and preparing for the worst. " In the meantime, we have set up this fund to help alleviate the costs of this tough journey.
All funds raised will be given to Patrick and Megan to help them face the bills that come with Lainey's medical battle as well as all the anticipated costs that will come with this journey. Amidst the worry of Lainey's health and care, we hope they won't have to stress over finances.
We sincerely thank you for every dollar you are able to give and every prayer said. Every little bit helps and we are immensely grateful!
- Brittany Korth
- Missy/Mike Yeager
- Jasmine Stewart
- Alejandra Calderon
- Brian Walker
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