9 years ago when I was 20 weeks pregnant for our second child, Hailee, I went in for a routine ultrasound. Jeff and I were excited to see our second child on the screen. We had no idea if we were having a girl or a boy and we did not care. The nurse poured the warm gel onto my stomach and slowly rubbed the probe around it. She got very quiet very quickly and looked at me and said "So were you thinking about getting an amnio today?"
Tears immediately began to flow from my eyes. That was not a normal question that they ask you during a routine ultrasound. I knew something was terribly wrong for her to ask such a question. Jeff had no idea what was going on he was confused and worried about why I was crying. He then got nervous and asked her "Why are you asking this?"
She said "The doctor will be right in to discuss this with you!"
Sure enough the doctor, who was watching the ultrasound from his office on his computer, came in with a grim look on his face. He sternly looked at us and told us that our baby was very sick. He took the probe from the nurse and positioned it onto my quivering stomach. On the monitor of the ultrasound machine he pointed to Hailee's head. Looking at the screen we saw what looked like 2 heads. He pointed to one and said "This is called a Cystic Hygroma." He explained to us that a Cystic Hygroma is a fluid filled mass that usually forms in the head or neck area of a 'fetus' (I hate that word FYI). He said our 'fetus' BABY had a large one growing in the base of her skull and back of her neck. He also proceeded to show us her intestines. She had SEVERAL large blockages throughout her intestines. He told us that she was a very sick baby! He did not offer any hope for her. Then he uttered the words that haunt us until this day. He said that she would not likely survive the entire pregnancy and if she did she would surely die soon after birth. He told us that we should consider our "OPTIONS" and terminate the pregnancy.
Wait....
did he just tell us to ABORT our precious daughter???
did he just tell us to ABORT our precious daughter???
HE DID!
Jeff, spoke up quickly and told him to NEVER mention that word to us again. He told him that this is our child that we love no matter what is 'wrong' with her! God has a purpose for her! He has a purpose for EVERY life!
The doctor then proceeded to tell us that he suspected she could have any of the following genetic conditions:
1. Trisomy 18
2. Down Syndrome
3. Cystic Fibrosis
4. Turner's Syndrome
5. Noonan's Syndrome
To name a few!
The doctor saw that we wanted our baby and we loved her so he suggested that we get an Amniocentesis to check for whatever they believed to be 'wrong' with her. They gave us time to think about it. They gave us as much time as we needed. We knew that amnio's can be dangerous to the baby and can cause a miscarriage or hurt the baby. They led us to a private room and let us use their phone to make calls to whomever we wished to call. We immediately called our minister and dear friends, Glen and his wife Kathy. Jeff told them everything and they lovingly prayed with us. They also passed it along to our church family to pray for our baby girl and us. After 2 hours of praying and crying we decided that we would go ahead with the amnio. We wanted to know what our child needed. We had it done to prepare ourselves for her. Whatever our precious Hailee had we wanted to be prepared. We wanted to get her all the help we could possibly find. We wanted to find support groups for other parents with children with her condition. We just wanted to be ready. We knew we could handle anything God laid before us. The only thing we were afraid of was that our little girl had something terminal like the doctor suspected. But no matter what we were choosing life for her! God created her in His image! He chose us to be her parents. She was a gift to us from God and we knew that she was special.
One thing was decided before we knew the sex of our baby was names. Hailee Meleah, if we were having a girl and Malachi Scott, if we were having a boy. When hearing we were having a girl we quickly started calling her Hailee but her middle name did not fit in my mind. I told Jeff that we were naming her Hailee GRACE because by the Grace of God He was going to heal her!
The amnio was horrible! I literally passed out and wet my pants during the procedure which led the doctors to believe that my water had broke! They quickly did a test and found out that it was not amniotic fluid it was urine! It did not embarrass me at all! After the day we'd had peeing my pants was the LEAST of my worries. They told us it would take 2 weeks for them to get all of the results in. They were the longest 2 weeks of our entire lives, let me tell you! During that time we researched every potential diagnosis they thought she possibly had. We found online support groups for a few of them and some local ones in our area. But most importantly, more than ANYTHING we prayed! We had people praying for our baby girl all over the country!
Finally the day came for us to get our results and on that day Glen and Kathy came with us. We were all nervous and anxious to find out what the results were. The doctor came into the room and said "We can not find anything wrong with your baby! The amnio was normal!" We all cried and hugged each other.
The doctor was still concerned because they did another ultrasound and Hailee still had the Cystic Hygroma and the blockages... He was stumped. He told us it could be something that a genetic test like an amnio could not find. So every week for the remainder of my pregnancy we had to travel to Pittsburgh to Allegheny General Hospital (1 hour away from our home)for a level 2 ultrasound so that the doctors could watch the Cystic Hygroma and blockages. I was sent to a cardio-paranatologist who did his own ultrasound but focused on Hailee's heart. One week we went for our now routine level 2 weekly ultrasound and the doctor was in shock because all of the blockages in Hailee's intestines were GONE! He couldn't believe that they were gone and he couldn't explain it. Then about a week before I went into labor for Hailee she stumped them again because this time her Cystic Hygroma had went from a liquid into a solid, something they told us they'd never seen before! They couldn't explain it! WE COULD! GOD! GOD did it! He healed her!
I gave birth to Hailee at 34 weeks and when she was born their were teams of doctors in the delivery room. Not just because of her being 6 weeks early but because of the unknowns of her condition. They immediately ran out of the room with her and Jeff followed behind them. She was poked, prodded, scanned, measured and tested for anything they could test her for.
Hailee blew them away yet again! This precious baby was 6 weeks premature and her lungs were fully developed, she weighed 6 pounds (because I had borderline, gestational diabetes and the extra skin from her Cystic Hygroma). She had trouble regulating her body temperature and her blood sugar and she was weak. She also was very jaundice! Other than that she was perfectly healthy! They still could not figure out what caused the Cystic Hygroma and intestinal blockages. Hailee had a lot of extra skin around her neck from the Cystic Hygroma but she has since grown into her skin. She had to be seen by MANY specialists soon after her birth and for the first year of her life but they all scratched their heads in disbelief! She stumped all of them! Now we know that she was a lucky one! A lot of babies who are born with Cystic Hygroma's suffer from heart and breathing problems after they are born. We thank God that she is did not suffer any effects from it.
Hailee started seeing a geneticist at the age of 2 and this geneticist diagnosed her with Classic Ehlers-Danlos Syndrome. No, that is not the cause of her Cystic Hygroma or intestinal blockages but it did explain a lot of other things that we noticed as she grew her first 2 years of life. Hailee was behind which is normal for a preemie but something was just off. At the age of 2 Hailee still could not crawl or sit up by herself for very long without falling over. Her feet could bend flat against her shins. She was a very floppy baby. She could not bare weight on her legs they were just so weak. They said she was hypotonic which means low muscle tone. Her geneticist ran tests and came to the diagnosis of Ehlers-Danlos Syndrome, Classical type. It all fit! Hailee immediately started physical therapy weekly in our home and had to wear AFO's (ankle foot orthotics) on her legs to support and strenghten her ankles and feet. She also used a walker for several weeks!
One thing was decided before we knew the sex of our baby was names. Hailee Meleah, if we were having a girl and Malachi Scott, if we were having a boy. When hearing we were having a girl we quickly started calling her Hailee but her middle name did not fit in my mind. I told Jeff that we were naming her Hailee GRACE because by the Grace of God He was going to heal her!
The amnio was horrible! I literally passed out and wet my pants during the procedure which led the doctors to believe that my water had broke! They quickly did a test and found out that it was not amniotic fluid it was urine! It did not embarrass me at all! After the day we'd had peeing my pants was the LEAST of my worries. They told us it would take 2 weeks for them to get all of the results in. They were the longest 2 weeks of our entire lives, let me tell you! During that time we researched every potential diagnosis they thought she possibly had. We found online support groups for a few of them and some local ones in our area. But most importantly, more than ANYTHING we prayed! We had people praying for our baby girl all over the country!
Finally the day came for us to get our results and on that day Glen and Kathy came with us. We were all nervous and anxious to find out what the results were. The doctor came into the room and said "We can not find anything wrong with your baby! The amnio was normal!" We all cried and hugged each other.
Even if the genetic testing came back showing that Hailee had any of the things they suspected she had we still would have had her! She still would have mattered! Every life matters to God! Every child is a gift no matter what!
The doctor was still concerned because they did another ultrasound and Hailee still had the Cystic Hygroma and the blockages... He was stumped. He told us it could be something that a genetic test like an amnio could not find. So every week for the remainder of my pregnancy we had to travel to Pittsburgh to Allegheny General Hospital (1 hour away from our home)for a level 2 ultrasound so that the doctors could watch the Cystic Hygroma and blockages. I was sent to a cardio-paranatologist who did his own ultrasound but focused on Hailee's heart. One week we went for our now routine level 2 weekly ultrasound and the doctor was in shock because all of the blockages in Hailee's intestines were GONE! He couldn't believe that they were gone and he couldn't explain it. Then about a week before I went into labor for Hailee she stumped them again because this time her Cystic Hygroma had went from a liquid into a solid, something they told us they'd never seen before! They couldn't explain it! WE COULD! GOD! GOD did it! He healed her!
I gave birth to Hailee at 34 weeks and when she was born their were teams of doctors in the delivery room. Not just because of her being 6 weeks early but because of the unknowns of her condition. They immediately ran out of the room with her and Jeff followed behind them. She was poked, prodded, scanned, measured and tested for anything they could test her for.
(Hailee a few hours old)
Hailee started seeing a geneticist at the age of 2 and this geneticist diagnosed her with Classic Ehlers-Danlos Syndrome. No, that is not the cause of her Cystic Hygroma or intestinal blockages but it did explain a lot of other things that we noticed as she grew her first 2 years of life. Hailee was behind which is normal for a preemie but something was just off. At the age of 2 Hailee still could not crawl or sit up by herself for very long without falling over. Her feet could bend flat against her shins. She was a very floppy baby. She could not bare weight on her legs they were just so weak. They said she was hypotonic which means low muscle tone. Her geneticist ran tests and came to the diagnosis of Ehlers-Danlos Syndrome, Classical type. It all fit! Hailee immediately started physical therapy weekly in our home and had to wear AFO's (ankle foot orthotics) on her legs to support and strenghten her ankles and feet. She also used a walker for several weeks!
Today Hailee turns 9 years old!
She is a happy, silly, beautiful little girl who loves to laugh. She has a very contagious laugh. Hailee is healthy and smart! She loves school, her friends, her family and Jesus! She loves going to church, 4-H, American Heritage Girls, swimming and most of all she LOVES to DRAW! She draws all the time and has every day since she was 2 years old! Hailee is full of life!
One thing that sticks out in our minds and haunts us to this day is WHAT IF we were pro-choice people? What if we believed that doctor that day at my 20 week ultrasound when he told us she wouldn't live? What if we did not want a Special Needs child or a sick child? What if we did not choose life for Hailee? These thoughts make me sick! They makes me sick because how many Hailee's have been aborted? How many women listened to their doctors tell them that their baby was very sick or that their baby may have Down Syndrome or Cystic Fibrosis and they should look at their "Options" and terminate their pregnancy? Too many! One is too many!
We chose life for our daughter! We are glad we did!
Happy Birthday to our sweet little Hailee! We love you and we can not believe how quickly time has passed that you are 9 already!
She is a happy, silly, beautiful little girl who loves to laugh. She has a very contagious laugh. Hailee is healthy and smart! She loves school, her friends, her family and Jesus! She loves going to church, 4-H, American Heritage Girls, swimming and most of all she LOVES to DRAW! She draws all the time and has every day since she was 2 years old! Hailee is full of life!
One thing that sticks out in our minds and haunts us to this day is WHAT IF we were pro-choice people? What if we believed that doctor that day at my 20 week ultrasound when he told us she wouldn't live? What if we did not want a Special Needs child or a sick child? What if we did not choose life for Hailee? These thoughts make me sick! They makes me sick because how many Hailee's have been aborted? How many women listened to their doctors tell them that their baby was very sick or that their baby may have Down Syndrome or Cystic Fibrosis and they should look at their "Options" and terminate their pregnancy? Too many! One is too many!
We chose life for our daughter! We are glad we did!
Happy Birthday to our sweet little Hailee! We love you and we can not believe how quickly time has passed that you are 9 already!
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