Jonathan's Heart Journey
Donation protected
Jonathan's heart story began before he even arrived on March 17th, 2016. Heather and I found out we were going to be having a baby boy. Little did we know we were in for a long battle with this little guy. Early on in pregnancy we were told that Jonathan's measurements matched up with babies that have Down Syndrome. We were directed to a specialist to get a better view of what we were dealing with. After seeing a specialist we were told that our baby boy has a heart condition that needed to be looked at by a heart specialist for children. We were then transferred to our third hospital where we found ourselves at Children's Mercy Hospital in Kansas City, Missouri.
Multiple ultrasounds and echocardiograms later we found out the diagnosis for baby Jonathan. Jonathan Nicholas Scheelk was diagnosed with a heart condition called Hypoplastic Left Heart Syndrome (HLHS), with an underlying condition of hydrocephalus. HLHS is a rare condition where the heart does not fully form the left ventricle of the heart, thus creating a “half-heart”. Hydrocephalus is fluid in the ventricles of the brain, which limits brain development and causes pressure on the brain. With the HLHS that was diagnosed, we were told that Jonathan would need to be rushed to the Cath-lab to have his Atrial Septum opened up allowing blood to flow to the right atrium and throughout the heart, when he was born.
At this point Down Syndrome was somewhat ruled out while there were other genetic testing that doctors wanted to perform. We were told that Jonathan only had a 20% chance to survive the situation he was faced with. There were multiple sit down consultations with specialists and surgeons for what the future entailed for Jonathan. Heather and I had the feeling like no one thought Jonathan would be able to survive, as they kept asking us if we wanted to proceed with the pregnancy. Of course we wanted to proceed and at least give Jonathan the fighting chance to show us what he was capable of.
After work on March 16th, Heather was standing in the door way when her “water” started to leak. Tunnel vision began to set in as reality was soon catching up with us. We made our way to Children’s Mercy Hospital where Jonathan would soon be delivered. This is when Jonathan began to prove everyone wrong and show us he is a fighter.
The initial thought of Jonathan being rushed to the Cath-lab was soon reversed as he was able to sustain blood flow to his heart through the 2 ASD holes he had (it was thought there was only 1 small hole). Cath-lab procedure was never needed. Jonathan was moved to the NICU where he was stabilized and remained on the ventilator for breathing support. Jonathan was given prostaglandins to keep the PDA open which allows his lungs to receive blood for oxygenation. Neonatologists balanced out the amount of oxygen and pressure he was getting from the vent in order to prevent back up of blood in the lungs and allow the right amount of blood to go to his body.
With further investigation of Jonathan, the Neonatologists came up with a list of surgeries that Jonathan would soon need to go through.
- Norwood/hybrid open heart surgery (HLHS)
- Brain surgery (fluid on the brain)
- Spinal surgery (tethered spine)
- Abdominal surgery (testis not dropped)
- Colostomy (imperforate anus)
- Tracheotomy (breathing support)
We were continued to be asked if we wanted to continue with the plan of procedures to see if Jonathan would be able to sustain life.
Genetics testing came back with results of what might have caused all of these things to happen. Jonathan was diagnosed with Coffin-Siris Syndrome. Coffin-Siris is a rare genetic disorder that causes developmental delays and absent fifth finger and toe nails. With genetics testing back there was nothing that we already didn’t know about what Jonathan had. This basically just gave a name to what caused what we already knew.
Neonatologist now were telling us that Jonathan has a fused kidney that was not showing function. We were told that surgery was not going to be done unless Jonathan could show us that his kidney was functioning. Later that night Jonathan’s urine output was phenomenal. He continued to prove everyone wrong, and urine output has been great. He is our fighter.
Surgery came by to investigate Jonathan’s imperforate anus and they decided that he would need a colostomy at some point. That same night a NICU nurse found a small fistula on his scrotum that had meconium coming out of it. They consulted surgery in the morning and it was ruled out that Jonathan would not need a colostomy. They dilated his fistula and Jonathan was now able to express his meconium through this small hole. This opening is sufficient enough to allow Jonathan to hold off on surgery to connect his rectum to the anus. Jonathan continues to show us that he is fighting.
Neonatologist were now telling us that Jonathan needed to show us that he is able to use his lungs as he had been “riding the vent”. If Jonathan could not show us that his lungs were working then they would not be able to do further surgeries. The next day Jonathan was breathing over the vent and using his lungs too much. They had to sedate him in order to limit the amount of blood his lungs were getting. He is our little fighter.
On the night of March 30th, Neurology called us at 11:45 p.m. to inform us that Jonathan would need an emergent VP brain shunt placed in his ventricles to relieve the pressure on his brain as it had been increasing over the last two weeks. On March 31st at 9:30 a.m. Neurosurgery took Jonathan from us to perform his first surgery. This was a very scary time as we were told that it is very risky to perform this type of surgery on a baby that only has half-a-heart and balance issues with oxygen. After about a 2 ½ hour process/procedure, the neurosurgeon gave us the news that Jonathan did great in surgery and is recovering well!! Jonathan is strong.
The next plan is to get well enough for the hybrid heart procedure. We had more consults with specialist to discuss what Jonathan’s life is going to look like if/when he were to survive heart surgery. We were prepared for the road ahead of us and decided to continue with the plan. Heart surgery is planned for April 13th.
Even after all the bad news we had been getting with Jonathan’s diagnosis and future, he continues to show us he is fighting and overcoming huge obstacles.
We are starting this Go Fund Me page because of what our future has in store for us. It has been decided between my wife and I that the best thing to do for Jonathan is to have my wife become a stay-at-home mother while he is recovering. Jonathan is going to need a lot of attention, support, and guidance as he continues to grow and show us what he can and can’t do. This Go Fund Me page will help greatly in the income we are losing from Heather not being able to go to work for right now. It will also help with the bills that have already started to come in for the procedures that have helped Jonathan show us he is strong and able to beat the odds he was given.
We understand that not everyone is in a place financially where they can help support our family. This is where I’m asking that you support us with prayer. God does amazing things, prayer does amazing things. The journey we have been going through and continue to fight with Jonathan could not have been done without everyone’s continued prayer and support. Please spread the word about Jonathan, financially, and even more importantly spiritually.
https://www.facebook.com/Jonjonsheart/?fref=ts
Multiple ultrasounds and echocardiograms later we found out the diagnosis for baby Jonathan. Jonathan Nicholas Scheelk was diagnosed with a heart condition called Hypoplastic Left Heart Syndrome (HLHS), with an underlying condition of hydrocephalus. HLHS is a rare condition where the heart does not fully form the left ventricle of the heart, thus creating a “half-heart”. Hydrocephalus is fluid in the ventricles of the brain, which limits brain development and causes pressure on the brain. With the HLHS that was diagnosed, we were told that Jonathan would need to be rushed to the Cath-lab to have his Atrial Septum opened up allowing blood to flow to the right atrium and throughout the heart, when he was born.
At this point Down Syndrome was somewhat ruled out while there were other genetic testing that doctors wanted to perform. We were told that Jonathan only had a 20% chance to survive the situation he was faced with. There were multiple sit down consultations with specialists and surgeons for what the future entailed for Jonathan. Heather and I had the feeling like no one thought Jonathan would be able to survive, as they kept asking us if we wanted to proceed with the pregnancy. Of course we wanted to proceed and at least give Jonathan the fighting chance to show us what he was capable of.
After work on March 16th, Heather was standing in the door way when her “water” started to leak. Tunnel vision began to set in as reality was soon catching up with us. We made our way to Children’s Mercy Hospital where Jonathan would soon be delivered. This is when Jonathan began to prove everyone wrong and show us he is a fighter.
The initial thought of Jonathan being rushed to the Cath-lab was soon reversed as he was able to sustain blood flow to his heart through the 2 ASD holes he had (it was thought there was only 1 small hole). Cath-lab procedure was never needed. Jonathan was moved to the NICU where he was stabilized and remained on the ventilator for breathing support. Jonathan was given prostaglandins to keep the PDA open which allows his lungs to receive blood for oxygenation. Neonatologists balanced out the amount of oxygen and pressure he was getting from the vent in order to prevent back up of blood in the lungs and allow the right amount of blood to go to his body.
With further investigation of Jonathan, the Neonatologists came up with a list of surgeries that Jonathan would soon need to go through.
- Norwood/hybrid open heart surgery (HLHS)
- Brain surgery (fluid on the brain)
- Spinal surgery (tethered spine)
- Abdominal surgery (testis not dropped)
- Colostomy (imperforate anus)
- Tracheotomy (breathing support)
We were continued to be asked if we wanted to continue with the plan of procedures to see if Jonathan would be able to sustain life.
Genetics testing came back with results of what might have caused all of these things to happen. Jonathan was diagnosed with Coffin-Siris Syndrome. Coffin-Siris is a rare genetic disorder that causes developmental delays and absent fifth finger and toe nails. With genetics testing back there was nothing that we already didn’t know about what Jonathan had. This basically just gave a name to what caused what we already knew.
Neonatologist now were telling us that Jonathan has a fused kidney that was not showing function. We were told that surgery was not going to be done unless Jonathan could show us that his kidney was functioning. Later that night Jonathan’s urine output was phenomenal. He continued to prove everyone wrong, and urine output has been great. He is our fighter.
Surgery came by to investigate Jonathan’s imperforate anus and they decided that he would need a colostomy at some point. That same night a NICU nurse found a small fistula on his scrotum that had meconium coming out of it. They consulted surgery in the morning and it was ruled out that Jonathan would not need a colostomy. They dilated his fistula and Jonathan was now able to express his meconium through this small hole. This opening is sufficient enough to allow Jonathan to hold off on surgery to connect his rectum to the anus. Jonathan continues to show us that he is fighting.
Neonatologist were now telling us that Jonathan needed to show us that he is able to use his lungs as he had been “riding the vent”. If Jonathan could not show us that his lungs were working then they would not be able to do further surgeries. The next day Jonathan was breathing over the vent and using his lungs too much. They had to sedate him in order to limit the amount of blood his lungs were getting. He is our little fighter.
On the night of March 30th, Neurology called us at 11:45 p.m. to inform us that Jonathan would need an emergent VP brain shunt placed in his ventricles to relieve the pressure on his brain as it had been increasing over the last two weeks. On March 31st at 9:30 a.m. Neurosurgery took Jonathan from us to perform his first surgery. This was a very scary time as we were told that it is very risky to perform this type of surgery on a baby that only has half-a-heart and balance issues with oxygen. After about a 2 ½ hour process/procedure, the neurosurgeon gave us the news that Jonathan did great in surgery and is recovering well!! Jonathan is strong.
The next plan is to get well enough for the hybrid heart procedure. We had more consults with specialist to discuss what Jonathan’s life is going to look like if/when he were to survive heart surgery. We were prepared for the road ahead of us and decided to continue with the plan. Heart surgery is planned for April 13th.
Even after all the bad news we had been getting with Jonathan’s diagnosis and future, he continues to show us he is fighting and overcoming huge obstacles.
We are starting this Go Fund Me page because of what our future has in store for us. It has been decided between my wife and I that the best thing to do for Jonathan is to have my wife become a stay-at-home mother while he is recovering. Jonathan is going to need a lot of attention, support, and guidance as he continues to grow and show us what he can and can’t do. This Go Fund Me page will help greatly in the income we are losing from Heather not being able to go to work for right now. It will also help with the bills that have already started to come in for the procedures that have helped Jonathan show us he is strong and able to beat the odds he was given.
We understand that not everyone is in a place financially where they can help support our family. This is where I’m asking that you support us with prayer. God does amazing things, prayer does amazing things. The journey we have been going through and continue to fight with Jonathan could not have been done without everyone’s continued prayer and support. Please spread the word about Jonathan, financially, and even more importantly spiritually.
https://www.facebook.com/Jonjonsheart/?fref=ts
Organizer
Heather Nicole Scheelk
Organizer
Smithville, MO
