My reason to post today is because I wanted to share the story of Silas and how God has and continues to preserve his life. I had the privilege to share his story with the women of my church a few weeks ago. The theme was thanksgiving and gratitude. As I was compiling his story from past blog posts, I was continually amazed at the poor prognosis of his condition, so much so that I keep wondering if I'm reading and understanding correctly. It's almost unbelievable when you read the statistics. I am so grateful that God chose to bless him and bless us through him.
So here is what I shared:
The date was April 1, 2013. It was close to dinner time and I was cooking in the kitchen when
my phone rang. After the usual pleasantries, the voice on the other end of the line said, “There
is something wrong with your baby. I think you should call the elders of your church and ask
them to pray.” These words struck fear in my heart and I had to make a choice: would I live in
fear or would I trust God no matter the outcome?
Isaiah 26:3 “You keep him in perfect peace whose mind is stayed on you, because he trusts in you.”
Let’s take a moment to backup in time. The year was 2013. I had been happily married to my husband John for 10 years. Our two boys, Titus and Abraham, were ages 8 and 7 respectively. We were happy and things were great. I had always dreamed of having more kids, but John was content with our two boys, and because of some of my medical issues, we thought our family was complete. You can imagine our joy and complete surprise when we realized we were pregnant at the beginning of 2013. I was considered “advanced maternal age” and I’m not sure what they would call John! Because I had long dreamed of adding to our family, I knew from the beginning that I wanted a different experience this time around. Our plan was to have the baby at a birth center with as few medical interventions as possible. I even knew which midwife I wanted, as I had been introduced to her years before at our previous church. I had a plan and it was all good. Until it wasn’t.
Jeremiah 29:11 “For I know the plans I have for you, declares the Lord, plans for welfare and not for evil, to give you a future and a hope.”
So back to that fateful phone call. All the midwife could tell me at this point was that the baby’s stomach was on the right side instead of the left. I had my 20 week ultrasound a few days before, and she was calling with the results. Because she had a complicated pregnancy years before, she had an ongoing relationship with a high-risk maternal/fetal specialist. She made us an appointment with him for a few days later and promised to meet us there. A quick search on google revealed that this particular specialist was one of the best in the area. God’s grace to us.
Deuteronomy 31:8 “It is the Lord who goes before you. He will be with you; he will not leave you or forsake you. Do not fear or be dismayed.”
On April 4, 2013 we met with our specialist for a special ultrasound that confirmed that our baby had a very rare genetic condition called situs inversus. Situs inversus has a few different presentations. In some cases all the organs are positioned in a mirror image from their normal positions. In other cases some organs are reversed and others are not, which can lead to many complications. Our baby was diagnosed with situs inversus with levocardia, which is just a fancy way to say that his abdominal organs are in reverse position but his heart is on the correct side. Levocardia is rarer, occurring in 1 in 22,000 people and often associated with other cardiac abnormalities. Almost 100% of cases of situs inversus with levocardia are associated
Isaiah 26:3 “You keep him in perfect peace whose mind is stayed on you, because he trusts in you.”
Let’s take a moment to backup in time. The year was 2013. I had been happily married to my husband John for 10 years. Our two boys, Titus and Abraham, were ages 8 and 7 respectively. We were happy and things were great. I had always dreamed of having more kids, but John was content with our two boys, and because of some of my medical issues, we thought our family was complete. You can imagine our joy and complete surprise when we realized we were pregnant at the beginning of 2013. I was considered “advanced maternal age” and I’m not sure what they would call John! Because I had long dreamed of adding to our family, I knew from the beginning that I wanted a different experience this time around. Our plan was to have the baby at a birth center with as few medical interventions as possible. I even knew which midwife I wanted, as I had been introduced to her years before at our previous church. I had a plan and it was all good. Until it wasn’t.
Jeremiah 29:11 “For I know the plans I have for you, declares the Lord, plans for welfare and not for evil, to give you a future and a hope.”
So back to that fateful phone call. All the midwife could tell me at this point was that the baby’s stomach was on the right side instead of the left. I had my 20 week ultrasound a few days before, and she was calling with the results. Because she had a complicated pregnancy years before, she had an ongoing relationship with a high-risk maternal/fetal specialist. She made us an appointment with him for a few days later and promised to meet us there. A quick search on google revealed that this particular specialist was one of the best in the area. God’s grace to us.
Deuteronomy 31:8 “It is the Lord who goes before you. He will be with you; he will not leave you or forsake you. Do not fear or be dismayed.”
On April 4, 2013 we met with our specialist for a special ultrasound that confirmed that our baby had a very rare genetic condition called situs inversus. Situs inversus has a few different presentations. In some cases all the organs are positioned in a mirror image from their normal positions. In other cases some organs are reversed and others are not, which can lead to many complications. Our baby was diagnosed with situs inversus with levocardia, which is just a fancy way to say that his abdominal organs are in reverse position but his heart is on the correct side. Levocardia is rarer, occurring in 1 in 22,000 people and often associated with other cardiac abnormalities. Almost 100% of cases of situs inversus with levocardia are associated
with congenital heart disease. The prognosis of situs inversus with levocardia is poor, and only
5%–13% of patients survive for more than five years, mainly due to the severity of an
associated cardiac abnormality. So these are the statistics that one can glean from Dr. Google.
I don’t recommend him.
Psalm 94:19 “When the cares of my heart are many, your consolations cheer my soul.”
However, our ultrasound revealed just the opposite. His heart looked good with no sign of a major congenital heart defect. The blood flow going in and out of the heart was going in the correct direction. His brain, kidneys, intestines, and brain stem all appeared to be okay. We went into that appointment fully expecting that this one appointment would be the first of many, but the doctor felt like we would have a normal pregnancy with a normal delivery. My dream of having this baby with a midwife in a birth center was still possible, as long as we planned on having the baby evaluated by our pediatrician within 24 hours of birth. He recommended that we see him again at 32 weeks for another ultrasound to take a look again, once he was a little bigger. If nothing was suspicious, then the baby would be examined after birth to check on things that we could not see in utero. With situs inversus there is usually an issue with whether the spleen forms or not. The spleen is the body's organ to fight infection and this was something that we we would not know until after he was born and the baby had an ultrasound.
It was at this time that we shared the name we had picked for our third son because we wanted people to be able to pray for him by name: Silas Jack Rutherford. Silas is Latin for woods or forest which made me think of one of my favorite Bible verses that I love to pray for my boys: Isaiah 61:3 “that they may be called oaks of righteousness, the planting of the Lord, that he may be glorified.” Doesn’t that sound manly??? Also, Paul and Silas chose to follow and worship God in some of the most difficult circumstances, which felt fitting. His middle name is Jack which is a nickname for John, my husband’s name, and Jack means “God is gracious.”
So that was our diagnosis at 21 weeks. We had 11 weeks of waiting. 11 weeks of being anxious and having to choose to trust the Lord or live in fear. This has been a struggle of mine for many years. As my circle of responsibility has grown through marriage and having children, my irrational fear of sickness and death has multiplied. As I found myself confronted with an actual test of my faith, the battle against fear only intensified. It was through this time that I began to arm myself with Scripture specifically related to fear and trust. I now keep these in the notes section on my phone so that I can easily read through them and remind myself of what is true.
Proverbs 12:25 “Anxiety in a man’s heart weighs him down, but a good word makes him glad.”
After weeks of waiting and wondering, it was finally June 19, 2013, the date of our second super duper ultrasound. While waiting was difficult, we were full of gratitude that we had been waiting with good news rather than bad. The previous ultrasound, while it did confirm that his
Psalm 94:19 “When the cares of my heart are many, your consolations cheer my soul.”
However, our ultrasound revealed just the opposite. His heart looked good with no sign of a major congenital heart defect. The blood flow going in and out of the heart was going in the correct direction. His brain, kidneys, intestines, and brain stem all appeared to be okay. We went into that appointment fully expecting that this one appointment would be the first of many, but the doctor felt like we would have a normal pregnancy with a normal delivery. My dream of having this baby with a midwife in a birth center was still possible, as long as we planned on having the baby evaluated by our pediatrician within 24 hours of birth. He recommended that we see him again at 32 weeks for another ultrasound to take a look again, once he was a little bigger. If nothing was suspicious, then the baby would be examined after birth to check on things that we could not see in utero. With situs inversus there is usually an issue with whether the spleen forms or not. The spleen is the body's organ to fight infection and this was something that we we would not know until after he was born and the baby had an ultrasound.
It was at this time that we shared the name we had picked for our third son because we wanted people to be able to pray for him by name: Silas Jack Rutherford. Silas is Latin for woods or forest which made me think of one of my favorite Bible verses that I love to pray for my boys: Isaiah 61:3 “that they may be called oaks of righteousness, the planting of the Lord, that he may be glorified.” Doesn’t that sound manly??? Also, Paul and Silas chose to follow and worship God in some of the most difficult circumstances, which felt fitting. His middle name is Jack which is a nickname for John, my husband’s name, and Jack means “God is gracious.”
So that was our diagnosis at 21 weeks. We had 11 weeks of waiting. 11 weeks of being anxious and having to choose to trust the Lord or live in fear. This has been a struggle of mine for many years. As my circle of responsibility has grown through marriage and having children, my irrational fear of sickness and death has multiplied. As I found myself confronted with an actual test of my faith, the battle against fear only intensified. It was through this time that I began to arm myself with Scripture specifically related to fear and trust. I now keep these in the notes section on my phone so that I can easily read through them and remind myself of what is true.
Proverbs 12:25 “Anxiety in a man’s heart weighs him down, but a good word makes him glad.”
After weeks of waiting and wondering, it was finally June 19, 2013, the date of our second super duper ultrasound. While waiting was difficult, we were full of gratitude that we had been waiting with good news rather than bad. The previous ultrasound, while it did confirm that his
abdominal organs were flipped, it also did not disclose any other major problems. We went into
that appointment really not knowing what to expect and left feeling like we received the best
news possible. And the good news continued into our second appointment. We had our
arsenal of questions ready and prayed that our little guy would still look great on the ultrasound.
And he did! His heart was perfect with no major defects. The doctor said that if there was
something wrong, we would have been able to see it at this point. His stomach measured right
on average which indicated that his GI system was working well. His intestines looked perfect
with no obstructions or signs of dilation. When we asked the doctor about his spleen, the doctor
felt that because there were no other complications that he would likely have a normal spleen,
just on the incorrect side. The doctor even went so far to say that we should consider this a
normal pregnancy and a normal baby. We asked him his opinion of what should take place
after Silas was born, and he said there was no need to take him to the children's hospital for an
evaluation. Instead, he referred us to seeking our pediatrician's advice and wisdom on Silas'
care after birth. We couldn't believe our ears! John and I were not looking forward to making a
trip to the hospital after giving birth and having to make lots of really important decisions
regarding our baby at such an emotional and mentally exhausting time. God’s grace to us
was overwhelming!
Psalm 34:4 “I sought the Lord, and he answered me and delivered me from all my fears.”
Silas was born on August 23, 2013 at 6:38 am weighing in at 6lbs 10oz. His birth was exactly as I dreamed and hoped it would be, and we were immediately in love! He was perfect and looking at him you would never know that his insides were so crazy! We found ourselves in the pediatrician’s office that afternoon as we had planned. Our pediatrician was so gracious to us and took a special interest in Silas even before birth. He did lots of research and helped prepare us with questions to ask the maternal/fetal doctor at our second ultrasound. He monitored Silas’ weight very closely for the first week to ensure there were no absorption problems. He even personally called me twice at home to check up on him. After noting a few concerns, he ordered a sonogram on Silas.
At 7 days old, we went in for a sonogram on Silas’ abdomen. This was to check on position of his organs, and we also learned that he did in fact have a spleen! Prior to the sonogram, Silas could not have anything to eat for 3 hours and John and I were expecting the worst. Here we have a tiny baby who is hungry and he is being poked and prodded on by a stranger. Well God was certainly there with us in the exam room because Silas slept through the entire procedure! God’s grace to us again!
The results of the sonogram led to 2 more appointments. There were no noted malrotations of the bowels, but after consulting with a pediatric surgeon, they suggested that Silas have an upper gi test performed to see if a malrotation was likely to occur in the future. There was also an issue with his inferior vena cava. This is the large vein that carries deoxygenated blood from the lower half of the body into the right atrium of the heart. His does not enter the heart in the
Psalm 34:4 “I sought the Lord, and he answered me and delivered me from all my fears.”
Silas was born on August 23, 2013 at 6:38 am weighing in at 6lbs 10oz. His birth was exactly as I dreamed and hoped it would be, and we were immediately in love! He was perfect and looking at him you would never know that his insides were so crazy! We found ourselves in the pediatrician’s office that afternoon as we had planned. Our pediatrician was so gracious to us and took a special interest in Silas even before birth. He did lots of research and helped prepare us with questions to ask the maternal/fetal doctor at our second ultrasound. He monitored Silas’ weight very closely for the first week to ensure there were no absorption problems. He even personally called me twice at home to check up on him. After noting a few concerns, he ordered a sonogram on Silas.
At 7 days old, we went in for a sonogram on Silas’ abdomen. This was to check on position of his organs, and we also learned that he did in fact have a spleen! Prior to the sonogram, Silas could not have anything to eat for 3 hours and John and I were expecting the worst. Here we have a tiny baby who is hungry and he is being poked and prodded on by a stranger. Well God was certainly there with us in the exam room because Silas slept through the entire procedure! God’s grace to us again!
The results of the sonogram led to 2 more appointments. There were no noted malrotations of the bowels, but after consulting with a pediatric surgeon, they suggested that Silas have an upper gi test performed to see if a malrotation was likely to occur in the future. There was also an issue with his inferior vena cava. This is the large vein that carries deoxygenated blood from the lower half of the body into the right atrium of the heart. His does not enter the heart in the
correct place, so we were referred to a pediatric cardiologist for an echocardiogram to make
sure that this was okay.
At 12 days old, we had our first appointment with the cardiologist. He was a lovely, older gentleman and was the steady voice I needed to hear that day. Without getting into too much of the technical jargon, the echocardiogram confirmed exactly what we had expected. His heart is a little different but still functioning normally and though he had two little holes in his heart, neither were serious and would likely close on their own with time and growth. He even drew me a picture of his heart which was so helpful since I’m a visual learner. God’s grace even in the details! We were to see him again in 6 months to double check things.
At 20 days old, we had our first appointment with the pediatric surgeon. He first recommended that we have an upper GI test done to absolutely confirm what the abdominal ultrasound showed...that there truly is no malrotation. If there was malrotation, he would need surgery. If there was no malrotation, he would err on the conservative side and not pursue surgery until a problem perhaps arose later in life. So we scheduled the upper GI test for the following morning. Poor little guy had to drink a bottle of barium while they watched how it went through his bowels. Then they took three additional x-rays to make sure they had good pictures for the surgeon. Silas couldn't have anything to eat for three hours prior to the test so that was a challenge to time his feeding in the night to make the last one as close to the three hour window as possible. Then he refused to drink the barium out of their bottle. Fortunately I had one of our bottles with us, so they transferred the barium to that and thankfully after some coaxing, he drank what was needed to get the x-rays. It was tortuous for me to hear him scream as they held him still while doing the x-rays.
Then the waiting game began. I've always felt that Silas was going to be okay, even though we needed to complete all these tests to make sure. The cardiologist appointment was exactly what I expected and I just felt the same about this one too.
Finally, 5 days later the surgeon called and gave me the news I was hoping to hear...he did NOT need surgery! In fact, his bowels were in the position that the surgeon would put them in if he had needed surgery! This was also John’s birthday and it was the best birthday present ever. The surgeon went over signs to watch for because he is still at risk of a problem occuring in the future. We know to immediately take him to the ER. He also reminded us of the importance to tell every doctor we see about his situs inversus because he could be misdiagnosed...for example, his appendix is on the left instead of the right so appendicitis would be mistaken as something else. We scheduled an appointment to see him again at 1 year old and we were released from his care. God’s grace again!
Isaiah 41:13 “For I, the Lord your God, hold your right hand; it is I who say to you, “Fear not, I am the one who helps you.”
At 12 days old, we had our first appointment with the cardiologist. He was a lovely, older gentleman and was the steady voice I needed to hear that day. Without getting into too much of the technical jargon, the echocardiogram confirmed exactly what we had expected. His heart is a little different but still functioning normally and though he had two little holes in his heart, neither were serious and would likely close on their own with time and growth. He even drew me a picture of his heart which was so helpful since I’m a visual learner. God’s grace even in the details! We were to see him again in 6 months to double check things.
At 20 days old, we had our first appointment with the pediatric surgeon. He first recommended that we have an upper GI test done to absolutely confirm what the abdominal ultrasound showed...that there truly is no malrotation. If there was malrotation, he would need surgery. If there was no malrotation, he would err on the conservative side and not pursue surgery until a problem perhaps arose later in life. So we scheduled the upper GI test for the following morning. Poor little guy had to drink a bottle of barium while they watched how it went through his bowels. Then they took three additional x-rays to make sure they had good pictures for the surgeon. Silas couldn't have anything to eat for three hours prior to the test so that was a challenge to time his feeding in the night to make the last one as close to the three hour window as possible. Then he refused to drink the barium out of their bottle. Fortunately I had one of our bottles with us, so they transferred the barium to that and thankfully after some coaxing, he drank what was needed to get the x-rays. It was tortuous for me to hear him scream as they held him still while doing the x-rays.
Then the waiting game began. I've always felt that Silas was going to be okay, even though we needed to complete all these tests to make sure. The cardiologist appointment was exactly what I expected and I just felt the same about this one too.
Finally, 5 days later the surgeon called and gave me the news I was hoping to hear...he did NOT need surgery! In fact, his bowels were in the position that the surgeon would put them in if he had needed surgery! This was also John’s birthday and it was the best birthday present ever. The surgeon went over signs to watch for because he is still at risk of a problem occuring in the future. We know to immediately take him to the ER. He also reminded us of the importance to tell every doctor we see about his situs inversus because he could be misdiagnosed...for example, his appendix is on the left instead of the right so appendicitis would be mistaken as something else. We scheduled an appointment to see him again at 1 year old and we were released from his care. God’s grace again!
Isaiah 41:13 “For I, the Lord your God, hold your right hand; it is I who say to you, “Fear not, I am the one who helps you.”
We had a few other bumps along the way with things not related to situs inversus. At 4 months
old, our pediatrician ordered an ultrasound of Silas’ head because it was SO HUGE. He wanted
to make sure he did not have hydrocephalus in which fluid accumulates in the brain. Turns out
that nope, he just has a HUGE head. I think it’s because he is a genius.
And as if we needed one more thing related to his head, the pediatrician noted on day 1 of his life that his head was misshapen from how he was positioned inside of me. We tried to remedy this some by doing neck exercises and using a special little pillow for his head, but at 5 months old he was fitted with a cranial band, otherwise known as a helmet. Thankfully, we only had to wear it for a few months.
So fast forward to today. Silas is 5 years old and has never once had a complication from his reversed organs. He is a part of the 5% with his particular situs inversus that has a mostly normal heart with no complications. God preserved his life. We no longer see any specialists and he is considered as normal as can be.
While we certainly had the happy ending that we prayed for, my desire in sharing his story is to also be completely transparent and authentic. My fear and anxiety is still very much a part of my daily life. I am eternally grateful for Silas’ good health but would you believe that he struggles with anxiety too? God is teaching me so much about the parent/child relationship through anxiety. Just as I wish I could convince Silas that the things he fears most are not as scary as he thinks they are, God wants that same thing for me too. I see the bigger picture that Silas does not. God sees an even bigger picture that I do not. I want Silas to believe the truths that I am telling him. God wants me to believe His Word. I am learning that this is a process and a journey. I have learned that it is difficult to be anxious when you are focused on the things for which you are thankful.
Philippians 4:6-7 “Do not be anxious about anything, but in everything by prayer and supplication WITH THANKSGIVING, let your requests be made known to God. And the peace of God, which surpasses all understanding, will guard your hearts and minds in Christ Jesus.”
Amen.
And as if we needed one more thing related to his head, the pediatrician noted on day 1 of his life that his head was misshapen from how he was positioned inside of me. We tried to remedy this some by doing neck exercises and using a special little pillow for his head, but at 5 months old he was fitted with a cranial band, otherwise known as a helmet. Thankfully, we only had to wear it for a few months.
So fast forward to today. Silas is 5 years old and has never once had a complication from his reversed organs. He is a part of the 5% with his particular situs inversus that has a mostly normal heart with no complications. God preserved his life. We no longer see any specialists and he is considered as normal as can be.
While we certainly had the happy ending that we prayed for, my desire in sharing his story is to also be completely transparent and authentic. My fear and anxiety is still very much a part of my daily life. I am eternally grateful for Silas’ good health but would you believe that he struggles with anxiety too? God is teaching me so much about the parent/child relationship through anxiety. Just as I wish I could convince Silas that the things he fears most are not as scary as he thinks they are, God wants that same thing for me too. I see the bigger picture that Silas does not. God sees an even bigger picture that I do not. I want Silas to believe the truths that I am telling him. God wants me to believe His Word. I am learning that this is a process and a journey. I have learned that it is difficult to be anxious when you are focused on the things for which you are thankful.
Philippians 4:6-7 “Do not be anxious about anything, but in everything by prayer and supplication WITH THANKSGIVING, let your requests be made known to God. And the peace of God, which surpasses all understanding, will guard your hearts and minds in Christ Jesus.”
Amen.
