The First 24 Hours
Its crazy how someones life can change forever in a split second. It was just a week ago in my classes where I was talking to my students about how they will have a moments in their life that forever be burnt into their memories as "Where were you when?". I knew that yesterday our lives were going to change but I couldn't image the news that we received. We went for our 2nd trimester ultrasound at 22 weeks for a full body anatomy scan. We were so excited to finally find out the sex of a baby. We were amazed by how advance the technology has become and the ability to see everything. It wasn't until Dr. Renfroe came into the room with two nurses that we had any idea something was wrong. The doctor's first question was if we had any family history of spinal defects. Even then I don't think we understood what she was leading to. It wasn't until she pulled the image of our baby girl back up onto the screen and tells us that she has spina bifida. With both of us in shock, the doctor continued to talk about the baby yet I honestly cannot say how much of it we really heard. I sat there next to my wife constantly looking at her and knowing she is trying to hold everything back. With my background in biology I was blessed with knowing what the doctor was talking about and what to expect. However, I couldn't help but to feel cursed at the same time to know that I would have to be the one to explain everything to my loving wife.
The doctor began to talk about how our baby's spinal cord did not close in the lumbar region (lower region of your back); how our baby's legs are moving which means she isn't paralyzed but does appear have club feet. She also let us know that our baby will have bladder and bowel issues. Then she she pulled up an image of the baby brain and showed us the Hydrocephalus (fluid on the baby brain) which is caused from the opening in the spinal cord. At this moment, my wife burst into tears and we were both at a lost for words. Both nurses also began to cry and were trying to do everything to help comfort us. The doctor was in shock that we didn't know about this already. She said we could/should of known by week 16, however, our local hospital lacks the equipment needed to detect spina bifida. We were so overwhelmed that we just wanted leave. They kindly allowed us to have our space and were so polite and accommodating to us. Dr. Renfroe immediately called Dr. Smith, the OB/GYN that my wife works for, to share all the information they have at this point and time.
On our way home in the pouring rain we began to call our parents and tell them that we have bad news. Many tears were shed and we were so overwhelmed that we decided to cancel the reveal party we had schedule for the next day. Millions of questions and emotions began to race through my minds and hearts. We talked to Dr. Smith once we got home and she wanted to talk to me since she knew I would have a better understand of what is going on and what to expect. I cannot express how much of a blessing it has already been to have Dr. Smith in our lives. She is going above and beyond anyone expectations, looking out for us and helping us better understand everything. She even purchased access to a online medical journal database and gave me access to it since she knew I would be able to understand the research. I began researching right away trying to better understand everything that was going on while my wife spent hours on the phone contacting our love ones.
We somehow managed to fall asleep and get a decent night sleep even with everything going on. I found myself waking to tears running down my face about 4 in the morning, however, they were not tears of sadness which I couldn't understand at first. I began to smile as I thought about how blessed our baby girl will be with all the love and compassion she will be shown by us, our family and friends. If anyone can handle this hurdle in life, my wife and I will take it in strides. She has always worked for/with individuals with special needs and has a passion for nonprofit work, and I have always worked with kids all of my life with many different needs. I have also thought about all of the conversations I have had with my students about what "Life" is. I have always been fascinated by life and is probably why I got my degree in biology (study of life). Ever since I began to work with kids over 10 years ago I have always said that if I can impact at least one other persons life for the better than that is a life well lived.
We have already had so many people tell us that we are the "perfect couple" to handle and take care of our beautiful little gift earlier that day. As I woke from my sleep in tears of joy and a smile on my face I knew they were right. We know that there will be many trials along the way. With tears of sorrow and joy, I knew that above all things we will surround our baby girl, Paytin Elizabeth, with a compassion of never ending love. We would like to invite all of you on this incredible journey we are about to begin. We simply ask you not to feel sorry for us, but to simply show COMPASSION to those that you love as much as we know we will for our baby girl. We will be keeping this blog to keep everyone informed, to educate those we can, and to share our Joys and passions. Over the next few days, I will be posting information that I have learned in a way to help everyone understand exactly what spina bifida is and how we can make a change. I can not image the things that are running through your head as you are reading this but I hope above all things it brings compassion to your heart. Always let those that you love know how much they mean to you, I LOVE YOU, is the one phase that can NEVER be overused, and reach out to those in your life that need love.
So to all of you reading this please know we love you and welcome you to our Family where life begins & LOVE NEVER ENDS. God Bless
The doctor began to talk about how our baby's spinal cord did not close in the lumbar region (lower region of your back); how our baby's legs are moving which means she isn't paralyzed but does appear have club feet. She also let us know that our baby will have bladder and bowel issues. Then she she pulled up an image of the baby brain and showed us the Hydrocephalus (fluid on the baby brain) which is caused from the opening in the spinal cord. At this moment, my wife burst into tears and we were both at a lost for words. Both nurses also began to cry and were trying to do everything to help comfort us. The doctor was in shock that we didn't know about this already. She said we could/should of known by week 16, however, our local hospital lacks the equipment needed to detect spina bifida. We were so overwhelmed that we just wanted leave. They kindly allowed us to have our space and were so polite and accommodating to us. Dr. Renfroe immediately called Dr. Smith, the OB/GYN that my wife works for, to share all the information they have at this point and time.
On our way home in the pouring rain we began to call our parents and tell them that we have bad news. Many tears were shed and we were so overwhelmed that we decided to cancel the reveal party we had schedule for the next day. Millions of questions and emotions began to race through my minds and hearts. We talked to Dr. Smith once we got home and she wanted to talk to me since she knew I would have a better understand of what is going on and what to expect. I cannot express how much of a blessing it has already been to have Dr. Smith in our lives. She is going above and beyond anyone expectations, looking out for us and helping us better understand everything. She even purchased access to a online medical journal database and gave me access to it since she knew I would be able to understand the research. I began researching right away trying to better understand everything that was going on while my wife spent hours on the phone contacting our love ones.
We somehow managed to fall asleep and get a decent night sleep even with everything going on. I found myself waking to tears running down my face about 4 in the morning, however, they were not tears of sadness which I couldn't understand at first. I began to smile as I thought about how blessed our baby girl will be with all the love and compassion she will be shown by us, our family and friends. If anyone can handle this hurdle in life, my wife and I will take it in strides. She has always worked for/with individuals with special needs and has a passion for nonprofit work, and I have always worked with kids all of my life with many different needs. I have also thought about all of the conversations I have had with my students about what "Life" is. I have always been fascinated by life and is probably why I got my degree in biology (study of life). Ever since I began to work with kids over 10 years ago I have always said that if I can impact at least one other persons life for the better than that is a life well lived.
We have already had so many people tell us that we are the "perfect couple" to handle and take care of our beautiful little gift earlier that day. As I woke from my sleep in tears of joy and a smile on my face I knew they were right. We know that there will be many trials along the way. With tears of sorrow and joy, I knew that above all things we will surround our baby girl, Paytin Elizabeth, with a compassion of never ending love. We would like to invite all of you on this incredible journey we are about to begin. We simply ask you not to feel sorry for us, but to simply show COMPASSION to those that you love as much as we know we will for our baby girl. We will be keeping this blog to keep everyone informed, to educate those we can, and to share our Joys and passions. Over the next few days, I will be posting information that I have learned in a way to help everyone understand exactly what spina bifida is and how we can make a change. I can not image the things that are running through your head as you are reading this but I hope above all things it brings compassion to your heart. Always let those that you love know how much they mean to you, I LOVE YOU, is the one phase that can NEVER be overused, and reach out to those in your life that need love.
So to all of you reading this please know we love you and welcome you to our Family where life begins & LOVE NEVER ENDS. God Bless
What is Spina Bifida
Spina bifida means that the bones that protect the spinal cord have not formed completely while a baby is developing in the mother’s womb. This happens very early in pregnancy, within the first 28 days. Recent studies have shown that 90% of parents that have a child with Spina Bifida have no family history of the disorder. The exact cause of Spinia Bifida is unknown, however, studies show that an increase of Folic Acids can reduce the chance of occurrence. Folic Acid is found in many of the foods that we now eat however, I highly expect more and more doctors will recommend to women looking to get pregnant to take a 400mg pill everyday.
Spina bifida can happen anywhere along a baby’s back between the head and the hips. It happens most often in the lower back. This area is called the lumbar spine. The location and size of the opening determines what organs will be affected and to what degree. Children with spina bifida may have health problems because of the condition. They may be paralyzed (not able to move their legs) or have decreased movement of their legs, changes or loss of feeling in their legs. They may also have problems with their bladder and bowel function.
Another concern of Spina Bifida is that the brain has cerebrospinal fluid both inside and around it. The cerebrospinal fluid is created within the brain and usually flows through and around the brain. It is recycled towards the top of the brain, underneath the skull. Under certain circumstances, this circulation is impaired. This results in a build up of cerebrospinal fluid and pressure on the brain. This condition is referred to as Hydrocephalus.
About 1 baby in every 2,500 babies has some form of spina bifida.
This link below has some nice general information about the three types of Spina Bifida.
http://goo.gl/IZMY5D
Paytin has the most advance form of Spina Bifida called Myelomeningocele. The link below has some great information about the what Paytin has.
http://goo.gl/vU9dfV
Spina bifida can happen anywhere along a baby’s back between the head and the hips. It happens most often in the lower back. This area is called the lumbar spine. The location and size of the opening determines what organs will be affected and to what degree. Children with spina bifida may have health problems because of the condition. They may be paralyzed (not able to move their legs) or have decreased movement of their legs, changes or loss of feeling in their legs. They may also have problems with their bladder and bowel function.
Another concern of Spina Bifida is that the brain has cerebrospinal fluid both inside and around it. The cerebrospinal fluid is created within the brain and usually flows through and around the brain. It is recycled towards the top of the brain, underneath the skull. Under certain circumstances, this circulation is impaired. This results in a build up of cerebrospinal fluid and pressure on the brain. This condition is referred to as Hydrocephalus.
About 1 baby in every 2,500 babies has some form of spina bifida.
This link below has some nice general information about the three types of Spina Bifida.
http://goo.gl/IZMY5D
Paytin has the most advance form of Spina Bifida called Myelomeningocele. The link below has some great information about the what Paytin has.
http://goo.gl/vU9dfV
St. Louis Fetal Care Institute
There are a few facilities in the US that are capable of a fetal surgery. During a fetal surgery, they will open the fetus and repair the baby spine and close the fetus, allowing the baby to continue to grow in the womb. We were blessed with the opportunity today with the pre-approval for fetal surgery at Cardinal Glennon. Thanks to all of help and hard work that Dr. Smith has been doing. She was able to get us in this week to see the group of specialist at Cardinal Glennon. The doctor there has done 58 of these highly specialized surgeries and has had some amazing results. We will be heading down Wednesday and Thursday to run 4 different test to determine if Kristi and Paytin qualify for the surgery.
The link below will give you an idea of what we are going to do over the two days.
http://goo.gl/lG0FlL
There has been some major successes with this surgery for individuals with spina bifida. Below I have provide links to results to two different sets of trails.
The MOMS trail which is the older trial was done in 2011.
http://goo.gl/Ek7Q9K
The CHOPS trail (Childerns Hospital of Phillidephia) will was only a few years later has results that showed some HUGE medical advances.
http://goo.gl/kPTsZn
We won't know for sure for a few days if Paytin will qualify for the surgery, however, we are extremely hopeful. Either way we will be blessed with the opportunity to speak with and learn from multiple specialist on spina bifida.
We can't thank everyone enough for all the the love and support we have been shown in such a short period of time. It's crazy to think that just Friday we found out the news. Then in less than a week we may have answers and possible means the help improve Paytin's life. God truly does work in mysterious ways. We will keep everyone posted on what we learn over the next few days.
The link below will give you an idea of what we are going to do over the two days.
http://goo.gl/lG0FlL
There has been some major successes with this surgery for individuals with spina bifida. Below I have provide links to results to two different sets of trails.
The MOMS trail which is the older trial was done in 2011.
http://goo.gl/Ek7Q9K
The CHOPS trail (Childerns Hospital of Phillidephia) will was only a few years later has results that showed some HUGE medical advances.
http://goo.gl/kPTsZn
We won't know for sure for a few days if Paytin will qualify for the surgery, however, we are extremely hopeful. Either way we will be blessed with the opportunity to speak with and learn from multiple specialist on spina bifida.
We can't thank everyone enough for all the the love and support we have been shown in such a short period of time. It's crazy to think that just Friday we found out the news. Then in less than a week we may have answers and possible means the help improve Paytin's life. God truly does work in mysterious ways. We will keep everyone posted on what we learn over the next few days.
Day 1 at Cardinal Glennon
Our first day here at Cardinal Glennon is now over. We couldn't be more impressed with the hospital and the wonderful caring staff. Kristi had a echo-cardiogram where the doctor found out that their is something wrong with Paytin's heart. We were told she has a congenital heart defect. There are two separate problems; the first one is that the wall between the left and right ventricle (bottom chambers of the heart that push blood to the lungs and body) is incomplete. This means that the oxygenated and de-oxygenated blood is mixing which may exclude Paytin from being a candidate for the fetal surgery. The second issue is the Pulmonary Artery is smaller than normal which restricts the amount of blood that is able to flow threw it. The image below shows a picture of a normal heart, the red circle shows the wall between the ventricles that is missing.
We also met with the genetic counselor who is concerned that Paytin may also have a genetic disorder, which would explain the heart defect and some other soft markers. The results from the amniocentesis tomorrow will let us know if she has a genetic disorder or not. Tomorrow we have a long day of two more test and meeting with four more specialist. Once we know more we will be updating the blog.
Day 2 at Cardinal Glennon
We continue to be impressed more and more by the amazing staff at Cardinal Glennon Fetal Care Institute. Kristi had her ultrasound where Paytin got her first nickname "Pun-kin Butt" thanks to Cindy the sonographer. The findings the ultrasound did raise some concerns about Paytin, so Dr. Mehra wanted to run a FISH test which allows them to take a look for trisomy genetic disorders. In order to do this, Kristi had to have the "A-Test" (amniocentesis) where they took some amniotic fluid out of the uterus.
Our Cardinal Glennon Family
We couldn't have been more blessed with the amazing staff at the St. Louis Cardinal Glennon Fetal Care Institute. They have taken care of us as if they have known us all of their lives. We would like to give a huge thanks to everyone there who have helped us. First, to Marge for just being awesome, and oh, who can forget helping escort Kristi to the dreaded A-Test. Also, to Kathy and Valerie for sitting down and being so personal with us and making sure we felt comfortable. Then, to Cindy for walking is through the ultrasound, showing us everything and taking the time to explain it (and of course giving Paytin her first nickname "Pun-kin Butt"). Of course, thanks to Rachael for talking to us about the genetic disorder (which had to be one the roughest jobs) and staying longer than she had to, in-order for us to get the results on the FISH test. Many thanks to Dr. Mehra for being so patient with us and explaining everything in terms so that Kristi could understand, and answering any questions that we had. Last, but certainly not least, I can not thank Julie enough. Julie was our nurse through our two days there. She was absolutely amazing. She was there with us through the laughter and the many tears. At Cardinal Glennon they have an award (Daisy Award) there for an employee who makes the biggest impact on patients and families (voted on by them). Hands down, Julie will always have our Daisy Award and forever be a part of our family.
The Results
Friday afternoon we got the phone call from Rachael with the results from the FISH test. The test came back positive for Edwards Syndrome. The link below will explain what Edwards is and the effects.
http://www.cardinalglennon.com/fetalcareinstitute/conditions/genetic%20syndromes/Pages/Trisomy18.aspx
http://www.cardinalglennon.com/fetalcareinstitute/conditions/genetic%20syndromes/Pages/Trisomy18.aspx