Hope for Baby Maeve: Dandy Walker Syndrome
Donation protected
My husband, Cory, and I found out in August that after 5 years of trying we were finally pregnant! We were shocked at first but were beyond excited. Cory even downloaded an expecting mother app to be updated in real time about our baby's development week by week.
Six weeks into my pregnancy I started to get sick. I threw up all day, and throughout most nights. Since this was my first pregnancy, I initially assumed it was normal morning sickness. Within days my health degenerated to where I could no longer keep food or water down. Despite my stomach being completely empty, I still continued to throw up bile.
I went to the hospital several times for IV fluids and was quickly diagnosed with hyperemesis gravidarum. My doctors prescribed every medication, and I even tried a Zofran pump. I had to switch the needle in my stomach twice a day to stay hooked up to continuous medication and even that did not help.
Nothing worked and after three and a half weeks I had lost 30 pounds. I was admitted to the hospital for severe dehydration and malnutrition. My gall bladder and liver were no longer functioning, and my potassium levels were dropping to dangerous levels. I stayed in the hospital for over a week while the doctors tried to find a solution and get me stabilized.
Ultimately, I had a surgery where a Groshong catheter was put directly into a vein in my chest. Total Parenteral Nutrition (TPN) fluid went directly into the catheter. Since they could not stop the vomiting so I could eat, I had to get the nutrition directly into my veins and bypass my stomach all together. I also started a regimen of steroids, Zofran, and had a Scopolamine patch before I was finally discharged.
For the next 8 weeks I was on home health care where I had to hook myself up to IV fluids and mix different vitamins and supplements into the giant bag of TPN I would wear in a large backpack. With this I was able to slowly feel relief and could begin to eat small amounts on my own. The day before Thanksgiving I finally had the catheter removed, and for the next two weeks got to experience a semi-normal pregnancy.
On December 2nd Cory and I went in for the anatomy scan to find out the gender of our baby. We were thrilled to find out it is a little girl! Unfortunately, that’s not the only thing we found out that day. The doctor discovered there was something unusual with her brain. Fluid was building up at the base of her brain instead of draining into the spinal column like it is meant to. We were referred to the Fetal Medicine Institute at Children's National in DC for a fetal MRI, an in-depth ultrasound, and a neurology consult.
The following week we got into DC before 7AM for an hour-long MRI and an additional ultrasound. Afterwards, we waited anxiously to talk to a team of fetal neurologists and genetic counselors. Our meeting took four hours, and we were told that our sweet baby has a Dandy Walker Malformation. The team explained there is a large fluid filled cyst at the base of the brain causing the cerebellum to be significantly undersized. Her corpus callosum is approximately half the length it’s supposed to be which is less common. The cyst is so large that she has considerably less brain matter than she is meant to. She has an excess of fluid in the ventricles that may require a shunt after birth.
The MRI also showed the back of her brain, where her occipital lobe is, is very thin. This will cause her to be anywhere from moderately to completely visually impaired. The neurologist is very concerned how her brain will develop folds due to the thinning of that area. The doctors couldn't determine an exact cause for the thinning, but think it is likely our baby had a stroke at some point during development.
Due to all of this the doctors are very concerned about our baby. They expect her to be somewhere between moderately to severely developmentally delayed, may suffer from seizures, and could potentially require a feeding tube. If she is able to walk or talk at all, she will need a lot of assistance from speech and physical therapists. Unfortunately, nothing will come easy to our little girl, but we are staying as hopeful as we can that she will have the best possible outcome! After all these struggles, we decided to name her Maeve, because despite it all she is still our “cause of great joy.”
Cory and I are doing our best, but the medical bills continue to pile up due to the extra appointments and tests I have to go through. And due to how difficult this pregnancy has been, I had to stop working which makes it just that much harder to keep up with all the additional expenses. As the adage goes, when it rains it pours. We were recently told the house we rent is being sold. Instead of waiting until the house is sold and only be given 30 days to find a new place, we are trying to buy a house before the baby arrives.
We have another MRI around 32-34 weeks to check to see how her brain has fared while developing folds and to further monitor the fluid build-up in her ventricles. We will post any updates as we get them!
We will be incredibly grateful for any donation to help alleviate this stressful time. Any prayers or positive thoughts are also warmly welcomed.
Thank you for taking the time to read our story and take care!
#babymaeve #babypowers
Six weeks into my pregnancy I started to get sick. I threw up all day, and throughout most nights. Since this was my first pregnancy, I initially assumed it was normal morning sickness. Within days my health degenerated to where I could no longer keep food or water down. Despite my stomach being completely empty, I still continued to throw up bile.
I went to the hospital several times for IV fluids and was quickly diagnosed with hyperemesis gravidarum. My doctors prescribed every medication, and I even tried a Zofran pump. I had to switch the needle in my stomach twice a day to stay hooked up to continuous medication and even that did not help.
Nothing worked and after three and a half weeks I had lost 30 pounds. I was admitted to the hospital for severe dehydration and malnutrition. My gall bladder and liver were no longer functioning, and my potassium levels were dropping to dangerous levels. I stayed in the hospital for over a week while the doctors tried to find a solution and get me stabilized.
Ultimately, I had a surgery where a Groshong catheter was put directly into a vein in my chest. Total Parenteral Nutrition (TPN) fluid went directly into the catheter. Since they could not stop the vomiting so I could eat, I had to get the nutrition directly into my veins and bypass my stomach all together. I also started a regimen of steroids, Zofran, and had a Scopolamine patch before I was finally discharged.
For the next 8 weeks I was on home health care where I had to hook myself up to IV fluids and mix different vitamins and supplements into the giant bag of TPN I would wear in a large backpack. With this I was able to slowly feel relief and could begin to eat small amounts on my own. The day before Thanksgiving I finally had the catheter removed, and for the next two weeks got to experience a semi-normal pregnancy.
On December 2nd Cory and I went in for the anatomy scan to find out the gender of our baby. We were thrilled to find out it is a little girl! Unfortunately, that’s not the only thing we found out that day. The doctor discovered there was something unusual with her brain. Fluid was building up at the base of her brain instead of draining into the spinal column like it is meant to. We were referred to the Fetal Medicine Institute at Children's National in DC for a fetal MRI, an in-depth ultrasound, and a neurology consult.
The following week we got into DC before 7AM for an hour-long MRI and an additional ultrasound. Afterwards, we waited anxiously to talk to a team of fetal neurologists and genetic counselors. Our meeting took four hours, and we were told that our sweet baby has a Dandy Walker Malformation. The team explained there is a large fluid filled cyst at the base of the brain causing the cerebellum to be significantly undersized. Her corpus callosum is approximately half the length it’s supposed to be which is less common. The cyst is so large that she has considerably less brain matter than she is meant to. She has an excess of fluid in the ventricles that may require a shunt after birth.
The MRI also showed the back of her brain, where her occipital lobe is, is very thin. This will cause her to be anywhere from moderately to completely visually impaired. The neurologist is very concerned how her brain will develop folds due to the thinning of that area. The doctors couldn't determine an exact cause for the thinning, but think it is likely our baby had a stroke at some point during development.
Due to all of this the doctors are very concerned about our baby. They expect her to be somewhere between moderately to severely developmentally delayed, may suffer from seizures, and could potentially require a feeding tube. If she is able to walk or talk at all, she will need a lot of assistance from speech and physical therapists. Unfortunately, nothing will come easy to our little girl, but we are staying as hopeful as we can that she will have the best possible outcome! After all these struggles, we decided to name her Maeve, because despite it all she is still our “cause of great joy.”
Cory and I are doing our best, but the medical bills continue to pile up due to the extra appointments and tests I have to go through. And due to how difficult this pregnancy has been, I had to stop working which makes it just that much harder to keep up with all the additional expenses. As the adage goes, when it rains it pours. We were recently told the house we rent is being sold. Instead of waiting until the house is sold and only be given 30 days to find a new place, we are trying to buy a house before the baby arrives.
We have another MRI around 32-34 weeks to check to see how her brain has fared while developing folds and to further monitor the fluid build-up in her ventricles. We will post any updates as we get them!
We will be incredibly grateful for any donation to help alleviate this stressful time. Any prayers or positive thoughts are also warmly welcomed.
Thank you for taking the time to read our story and take care!
#babymaeve #babypowers
Organizer
Clarissa Powers
Organizer
Waynesboro, PA