Help Give Astrid a Chance at Life
Donation protected
March 2018 was a life changing month for me. I held my dad’s hand as he passed away. My last words to him were, “I love you and I know you’ll be watching over us.” Us - myself and his granddaughter growing inside me. When my dad was in the hospital, I found out that despite polycystic ovarian syndrome, I had become pregnant. It was a beautiful mixture of bittersweet joy and hope. From the beginning I felt that this was God’s timing. In the midst of this heart wrenching loss, I had been blessed with our little miracle baby.
On May 29th, my husband and I went in for my anatomy scan. At an elective ultrasound a few weeks beforehand, we had found out that our baby is a girl. We were anxious to know if the ultrasound was correct because the sonographer was only 95% sure. Instead, we heard four words that made our hearts drop, “there is something wrong.”
Her kidneys didn’t look right and I had severely low amniotic fluid levels. I was told that we would need to see a maternal fetal medicine specialist for more information and testing. I was warned, though, that once fluid was low this early, it was a bad sign and it would be impossible to resume a normal pregnancy. I left the appointment in tears. My husband and I were heartbroken and shocked. We have no family history of fetal abnormalities and all our scans up until this one had been perfect.
The wait to see maternal fetal medicine was torture. I prayed so hard that they would have something else to say or some help to offer. After all, these are the doctors who handle high risk pregnancies and complications. Unfortunately, I was told at my maternal fetal medicine appointment that were was “no point” in attempting any intervention. My daughter’s kidneys had never properly formed, so she had no renal function. Without kidneys, she could not create and maintain amniotic fluid levels and without fluid around her, her lungs would not properly develop. I was welcome to carry my daughter to term, but I would need to make preparations for her passing. I asked if I could get a second opinion and she referred me to University of South Florida.
I dove into the internet to see if there was anything that could be done. It was online that I learned about amnioinfusions. An amnioinfusion is a special procedure where a needle is used to insert saline into the sac. This gives baby fluid to help her develop and protect her from the rest of mom’s organs. I was mad that the maternal fetal medicine specialist hadn’t mentioned them, but I quickly learned that even though amnioinfusions aren’t new, they are controversial due to risks and mixed success rates. I knew that I needed to try, though. If it would help my daughter, I was willing to try anything.
The specialist at University of South Florida did not have better news about my daughter’s kidneys. He did, however, offer a little bit of hope. Johns Hopkins is conducting a clinical trial for amnioinfusions to help babies with renal agenesis. If he could diagnose baby girl with renal genesis, I could be sent to Johns Hopkins in Baltimore for the clinical trial. He said he would perform an amnioinfusion for a diagnostic ultrasound to get better pictures. For the first time in weeks, we left Tampa with a little glimmer of hope.
Our hope did not last long, though. We drove to Tampa two days later and I received my first amnioinfusion followed by an ultrasound. It appeared that a kidney had tried to form, but it formed in the wrong spot and was disfigured with cysts. Not only could the doctor not confirm renal agenesis, but he could not give us any diagnosis. What he saw did not fit the normal parameters for renal agenesis, dysplastic kidneys, or polycystic kidneys. We left Tampa that night with no answers and no plan to help our daughter.
I dove into more research in the following days. I called all the major hospitals in Florida, but no one would perform the amnioinfusions my daughters needs. I connected with other “kidney moms” on Facebook. A fellow kidney mom gave me the contact information for the doctor in Georgia who performed the amnioinfusions that saved her baby. I called the doctor’s office on Friday morning and by Tuesday night my husband and I were making the 9 hour drive to Augusta, GA.
Meeting Dr. Davis has been the biggest blessing for our daughter on this journey. She is the first doctor to say “this is what I can do to help your baby.” From the start, Dr. Davis has been open and transparent about the risks and success rates with amnioinfusions. Infection, membrane rupture, and preterm labor are the greatest risks. The success rate for pulmonary survival, meaning the lungs develop enough for baby to breathe without help, is about 40%. Dr. Davis explained that if the amnioinfusions are successful, we will still have many hurdles to overcome, including dialysis and a kidney transplant. Knowing all of this, my husband and I made the decision to move forward with the amnioinfusions. When it comes to our daughter, we believe that any chance is better than no chance.
For the past three weeks I have traveled to Augusta, GA once a week to see Dr. Davis. The amnioinfusions have already made a huge difference for baby girl. She is constantly moving around, growing, and “breathing” in the fluid around her. She loves to suck on her fingers and she sometimes gets hiccups, which is a good sign that her diaphragm and lungs are developing.
On Wednesday, July 11th, I received a phone call that would once again turn things upside down. University Hospital in Augusta, GA would no longer be allowing Dr. Davis to perform amnioinfusions. I knew that there were many who did not agree with amnioinfusions for personal ethical reasons, but I never expected to have someone prevent my doctor and I from helping my daughter. Dr. Davis was able to convince the hospital to allow my weekly scheduled amnioinfuion on July 13th, but it would be my last and I would need to be referred elsewhere.
To say I am devastated would be an understatement. I finally found an amazing doctor willing to help my baby, but there are forces against us. Dr. Davis has been in contact with the doctors at Cincinnati Children’s Hospital and they have agreed to see me for an evaluation. The Fetal Center at Cincinnati Children’s Hospital are the leaders in amnioinfusion and amnioport research. In cases like mine, they are the “dream team.” The evaluation will be a two day process. The first day will involve lots of tests: MRIs, ultrasounds, etc. The second day will be filled with meetings with various specialists. At this meeting, they will tell me if they will be able to help and what they can do.
Traveling to Cincinnati and receiving care there will make a huge difference in our journey. They are the best team to see for amnioinfusions and pediatric nephrology. There are a lot of details to work out and we cannot do this alone. If Cincinnati is able to help, I will need to relocate until after delivery because one of their conditions is that I will need to deliver there. I will be able to return home once baby girl is stable enough to be moved, but that could take anywhere from 3-6 months after her birth. There is a long waiting list to stay at the Ronald McDonald House at Cincinnati Children’s Hospital, so until a room becomes available I will need to find housing elsewhere. My husband will only be able to take a few weeks off from work when baby girl makes her grand entrance, so I will be alone in a new city. I have never been more scared in my life. I will be leaving the only home I’ve ever known, my loving husband, my sweet dogs, and a job I love. If I don’t do this, though, my daughter won’t get the help she needs.
We have given our baby girl the name Astrid which means “God’s strength.” She isn’t even out of the womb yet and she is already one of the strongest humans I know. I truly believe that God gave her to me because He knew she needed a warrior mom to fight for her and I am trying my hardest.
Please join me in fighting for Astrid. Any money donated will go to helping us safely get to and stay in Cincinnati for her care. Every little bit helps on this journey. We have a long road ahead of us and a lot is uncertain. One thing is certain, though: even if a diagnosis is grim, all babies deserve a chance at life. Please help Astrid get her chance.
On May 29th, my husband and I went in for my anatomy scan. At an elective ultrasound a few weeks beforehand, we had found out that our baby is a girl. We were anxious to know if the ultrasound was correct because the sonographer was only 95% sure. Instead, we heard four words that made our hearts drop, “there is something wrong.”
Her kidneys didn’t look right and I had severely low amniotic fluid levels. I was told that we would need to see a maternal fetal medicine specialist for more information and testing. I was warned, though, that once fluid was low this early, it was a bad sign and it would be impossible to resume a normal pregnancy. I left the appointment in tears. My husband and I were heartbroken and shocked. We have no family history of fetal abnormalities and all our scans up until this one had been perfect.
The wait to see maternal fetal medicine was torture. I prayed so hard that they would have something else to say or some help to offer. After all, these are the doctors who handle high risk pregnancies and complications. Unfortunately, I was told at my maternal fetal medicine appointment that were was “no point” in attempting any intervention. My daughter’s kidneys had never properly formed, so she had no renal function. Without kidneys, she could not create and maintain amniotic fluid levels and without fluid around her, her lungs would not properly develop. I was welcome to carry my daughter to term, but I would need to make preparations for her passing. I asked if I could get a second opinion and she referred me to University of South Florida.
I dove into the internet to see if there was anything that could be done. It was online that I learned about amnioinfusions. An amnioinfusion is a special procedure where a needle is used to insert saline into the sac. This gives baby fluid to help her develop and protect her from the rest of mom’s organs. I was mad that the maternal fetal medicine specialist hadn’t mentioned them, but I quickly learned that even though amnioinfusions aren’t new, they are controversial due to risks and mixed success rates. I knew that I needed to try, though. If it would help my daughter, I was willing to try anything.
The specialist at University of South Florida did not have better news about my daughter’s kidneys. He did, however, offer a little bit of hope. Johns Hopkins is conducting a clinical trial for amnioinfusions to help babies with renal agenesis. If he could diagnose baby girl with renal genesis, I could be sent to Johns Hopkins in Baltimore for the clinical trial. He said he would perform an amnioinfusion for a diagnostic ultrasound to get better pictures. For the first time in weeks, we left Tampa with a little glimmer of hope.
Our hope did not last long, though. We drove to Tampa two days later and I received my first amnioinfusion followed by an ultrasound. It appeared that a kidney had tried to form, but it formed in the wrong spot and was disfigured with cysts. Not only could the doctor not confirm renal agenesis, but he could not give us any diagnosis. What he saw did not fit the normal parameters for renal agenesis, dysplastic kidneys, or polycystic kidneys. We left Tampa that night with no answers and no plan to help our daughter.
I dove into more research in the following days. I called all the major hospitals in Florida, but no one would perform the amnioinfusions my daughters needs. I connected with other “kidney moms” on Facebook. A fellow kidney mom gave me the contact information for the doctor in Georgia who performed the amnioinfusions that saved her baby. I called the doctor’s office on Friday morning and by Tuesday night my husband and I were making the 9 hour drive to Augusta, GA.
Meeting Dr. Davis has been the biggest blessing for our daughter on this journey. She is the first doctor to say “this is what I can do to help your baby.” From the start, Dr. Davis has been open and transparent about the risks and success rates with amnioinfusions. Infection, membrane rupture, and preterm labor are the greatest risks. The success rate for pulmonary survival, meaning the lungs develop enough for baby to breathe without help, is about 40%. Dr. Davis explained that if the amnioinfusions are successful, we will still have many hurdles to overcome, including dialysis and a kidney transplant. Knowing all of this, my husband and I made the decision to move forward with the amnioinfusions. When it comes to our daughter, we believe that any chance is better than no chance.
For the past three weeks I have traveled to Augusta, GA once a week to see Dr. Davis. The amnioinfusions have already made a huge difference for baby girl. She is constantly moving around, growing, and “breathing” in the fluid around her. She loves to suck on her fingers and she sometimes gets hiccups, which is a good sign that her diaphragm and lungs are developing.
On Wednesday, July 11th, I received a phone call that would once again turn things upside down. University Hospital in Augusta, GA would no longer be allowing Dr. Davis to perform amnioinfusions. I knew that there were many who did not agree with amnioinfusions for personal ethical reasons, but I never expected to have someone prevent my doctor and I from helping my daughter. Dr. Davis was able to convince the hospital to allow my weekly scheduled amnioinfuion on July 13th, but it would be my last and I would need to be referred elsewhere.
To say I am devastated would be an understatement. I finally found an amazing doctor willing to help my baby, but there are forces against us. Dr. Davis has been in contact with the doctors at Cincinnati Children’s Hospital and they have agreed to see me for an evaluation. The Fetal Center at Cincinnati Children’s Hospital are the leaders in amnioinfusion and amnioport research. In cases like mine, they are the “dream team.” The evaluation will be a two day process. The first day will involve lots of tests: MRIs, ultrasounds, etc. The second day will be filled with meetings with various specialists. At this meeting, they will tell me if they will be able to help and what they can do.
Traveling to Cincinnati and receiving care there will make a huge difference in our journey. They are the best team to see for amnioinfusions and pediatric nephrology. There are a lot of details to work out and we cannot do this alone. If Cincinnati is able to help, I will need to relocate until after delivery because one of their conditions is that I will need to deliver there. I will be able to return home once baby girl is stable enough to be moved, but that could take anywhere from 3-6 months after her birth. There is a long waiting list to stay at the Ronald McDonald House at Cincinnati Children’s Hospital, so until a room becomes available I will need to find housing elsewhere. My husband will only be able to take a few weeks off from work when baby girl makes her grand entrance, so I will be alone in a new city. I have never been more scared in my life. I will be leaving the only home I’ve ever known, my loving husband, my sweet dogs, and a job I love. If I don’t do this, though, my daughter won’t get the help she needs.
We have given our baby girl the name Astrid which means “God’s strength.” She isn’t even out of the womb yet and she is already one of the strongest humans I know. I truly believe that God gave her to me because He knew she needed a warrior mom to fight for her and I am trying my hardest.
Please join me in fighting for Astrid. Any money donated will go to helping us safely get to and stay in Cincinnati for her care. Every little bit helps on this journey. We have a long road ahead of us and a lot is uncertain. One thing is certain, though: even if a diagnosis is grim, all babies deserve a chance at life. Please help Astrid get her chance.
Organiser
Ana Imelda Rojas
Organiser
Saint James City, FL