Owen Binnebose Memorial Fund
Donation protected
As most of you may know, we tragically lost our youngest son, 6-month-old Owen Roslyn, to an infection after an extremely hard, lifelong battle for him on 4/4/17. We have set up this account to try and help with the mounting costs of the funeral, headstone, and lost wages during this extremely awful time in our lives. We appreciate any and all donations, whatever you can contribute helps tremendously.
Below is Owen's story:
Owen was born on 9/23/2016 with some very severe and serious congential birth defects. He came 4 weeks early due to one of them, a Tracheoesophageal Fistula. For Owen, having a TEF meant that the top portion of his esophagus stopped in a pocket and the bottom portion attached to his trachea. This meant that he couldn't eat and his stomach acid could get into his lungs. Our hometown hospital that he was delivered at is not equipped to deal with major birth defects, so within hours of being born he was flown to Sanford's Boekelheide NICU in Sioux Falls, SD. Once there, he underwent tests for the rest of that night and the next day in preperation for his TEF surgery and g-tube placement the following day.
This surgery would be a Right Thoracotomy, which I later learned that the Thoracotomy is one of the most painful surgeries to have, because they have to pull the ribs apart to access the chest cavity. After he came back from his surgery, he started to retain fluid rapidly. When he was born, he weighed 5 lbs 11 oz and at his highest weight gain during that period, he was up to 11 lbs 2 oz!
He was retaining fluid because of a couple of congenital heart defects that they found on a heart echo prior to surgery. He had an Atrial Septal Defect (large hole in the wall between the top two chambers of his heart), a very large Patent Ductus Arteriosus (an opening between the Aorta and Pulmonary Artery of the heart that is open for fetuses in utero, but should close shortly after birth), and a possible Coarctation of the Aorta (a narrowing of the Aorta). Because of this Owen was put on a couple of hardcore diuretics to help him pee more to get that fluid off. Once he was back down to around 7 1/2 lbs, he was ready for some heart surgeries, however, they couldn't do them at Sanford. So on Owen's 2-week-old birthday, he was flown to the Children's Hospital of Colorado in Aurora, CO to have his PDA closed and his Coarctation repaired.
When he went in for surgery, it was estimated that he wouldn't be out until late in the afternoon or early evening, but we got a surprise when he was done around 11:30 or so! The cardithoracic surgeon came out to talk to me and told me that the PDA was successfully closed off and that the Coarctation was very minor and he chose to leave it alone for now (no cutting into the aorta!) and to monitor it with regular echos to make sure it grows with him. If it were to get smaller, they could go in with a catheter and balloon it to stretch it out when he was older (much less invasive and much less risk!).
For the heart surgery, he had to have a Left Thoracotomy this time. Poor Baby!!
We spent three weeks total in Colorado's CICU, and about a week of that was trying to clear an infection called MSSA out of his blood. On Owen's 5-week-old birthday, he was flown back to Sioux Falls.
Once he was back in Sioux Falls, for almost two weeks, he was able to get his breathing tube out for the first time since birth (7 weeks)! He still had one tube in his mouth for feeding him past his stomach, but that was better than everything!
In the pictures you may also notice that Owen has a Complete Left Unilateral Cleft Lip and Palate. This was another one of his many birth defects. As the weeks turned into months, we discovered so many more that we hadn't known about. He was diagnosed with the following defects:
- Tracheoesophageal Fistula/Esopahgeal Atresia
- Complete Left Unilateral Cleft Lip and Palate
- Atrial Septal Defect
- Patent Ductus Arteriosus
- Bicuspid Aortic Valve
- Coarctation of the Aorta
- Double Vessel Umbilical Cord
- Dandy Walker Brain Malformation Variant
- Choanal Atresia
- Bilateral Retinal Colobomas
- Bilateral Optic Nerve Colobomas
- Multi-Suture Craniosynostosis
- Chronic Lung Disease
- Secondary Adrenal Insufficiency
- Micro Penis
- Tracheomalacia
- Broncheomalacia
- Subglottis Stenosis
- GastroEsophageal Reflux Disease
- Two failed newborn hearing screenings
He was then clinincally diagnosed with CHARGE Syndrome.
Colobomas of the Eye
Heart Defects
Atresia of the Chonae
Retardation of Growth and Development
Genital Abnormalities
Ear Abnormalities and Sensorineural Hearing Loss
He has had a few more surgeries between then and now to try and correct some things and stop others.
January 11th was one of those surgery days. Owen went down to have his Choanal Atresia opened and also had a Nissen Fundoplication (the top of the stomach is wrapped around the base of the esophagus to prevent or lessen reflux) done.
When Owen got back up to his room, within a few minutes, he fully coded. His entire monitor flat-lined and he needed to have chest compressions and to be bagged. He was down for about 3 minutes until they got him back. They had to pull out his ettube and have anesthesia come and re-intubate him. That was one of the roughest days that we've endured during Owen's journey up to that point.
On February 14th, Owen was flown to the Mayo Clinic in Rochester, MN to have his Craniosynostosis repaired, because the neurosurgeon in Sioux Falls wasn't comfortable doing it.
When we got to the NICU at Mayo I requested that he be evaluated by the Aerodigestive Team to have them look at this overall progress in that aspect since this is a typical CHARGEr problem and a lot of their care is centered around it.
When they took him down to the OR on the 17th of February, they planned quite a few things and only did two because nobody was expecting what they found. His airway was severely injured. It was swollen and raw by the vocal cords to the point that it had no lining and all they saw was pure cartilage. As they advanced towards the lungs, they saw that his TEF repair had a pinhole in it! As soon as they saw that they put some surgical glue on it and put some antibiotics on the inside of his trachea and decided to back out of the rest. They had also been planning to do a Tracheostomy that day but were unable and he came back intubated still. They pushed antibiotics and steroids over the weekend to try and calm down his trachea and prevent infection. On Tuesday the following week they took him back down to check on his progress. It was relatively unchanged, except that his TEF was now re-opened all the way!
The next day we had a Care Conference because I requested one. We now had to figure out when he would need his TEF re-repaired and his trach done. If he had the TEF done the following day, he would need to remain intubated for a couple of weeks. I knew that his trachea wouldn't heal before that ettube came out. That day they gave me a choice between TEF repair first or his Trach and it was no-brainer. He got his trach the following day.
Fast forward two weeks.. Owen went down for his TEF repair on 3/7/17. It was an extremely hard surgery on him.. He started not being able to oxygenate and was rushed back to the OR late that evening to be placed on ECMO, or Heart and Lung Bypass. His heart, lungs, liver, and kidneys took a huge hit. They thought that his heart, liver and lungs had recovered enough, so they tried to separate from ECMO on 3/17/17, but it was largely unsuccessful. His lactate climbed rapidly and his lungs filled with fluid and blood again. We've spent the last 11 days trying to get his lungs back to a good spot and that led to the "clamp test" that took place yesterday.
Below is Owen's story:
Owen was born on 9/23/2016 with some very severe and serious congential birth defects. He came 4 weeks early due to one of them, a Tracheoesophageal Fistula. For Owen, having a TEF meant that the top portion of his esophagus stopped in a pocket and the bottom portion attached to his trachea. This meant that he couldn't eat and his stomach acid could get into his lungs. Our hometown hospital that he was delivered at is not equipped to deal with major birth defects, so within hours of being born he was flown to Sanford's Boekelheide NICU in Sioux Falls, SD. Once there, he underwent tests for the rest of that night and the next day in preperation for his TEF surgery and g-tube placement the following day.
This surgery would be a Right Thoracotomy, which I later learned that the Thoracotomy is one of the most painful surgeries to have, because they have to pull the ribs apart to access the chest cavity. After he came back from his surgery, he started to retain fluid rapidly. When he was born, he weighed 5 lbs 11 oz and at his highest weight gain during that period, he was up to 11 lbs 2 oz!
He was retaining fluid because of a couple of congenital heart defects that they found on a heart echo prior to surgery. He had an Atrial Septal Defect (large hole in the wall between the top two chambers of his heart), a very large Patent Ductus Arteriosus (an opening between the Aorta and Pulmonary Artery of the heart that is open for fetuses in utero, but should close shortly after birth), and a possible Coarctation of the Aorta (a narrowing of the Aorta). Because of this Owen was put on a couple of hardcore diuretics to help him pee more to get that fluid off. Once he was back down to around 7 1/2 lbs, he was ready for some heart surgeries, however, they couldn't do them at Sanford. So on Owen's 2-week-old birthday, he was flown to the Children's Hospital of Colorado in Aurora, CO to have his PDA closed and his Coarctation repaired.
When he went in for surgery, it was estimated that he wouldn't be out until late in the afternoon or early evening, but we got a surprise when he was done around 11:30 or so! The cardithoracic surgeon came out to talk to me and told me that the PDA was successfully closed off and that the Coarctation was very minor and he chose to leave it alone for now (no cutting into the aorta!) and to monitor it with regular echos to make sure it grows with him. If it were to get smaller, they could go in with a catheter and balloon it to stretch it out when he was older (much less invasive and much less risk!).
For the heart surgery, he had to have a Left Thoracotomy this time. Poor Baby!!
We spent three weeks total in Colorado's CICU, and about a week of that was trying to clear an infection called MSSA out of his blood. On Owen's 5-week-old birthday, he was flown back to Sioux Falls.
Once he was back in Sioux Falls, for almost two weeks, he was able to get his breathing tube out for the first time since birth (7 weeks)! He still had one tube in his mouth for feeding him past his stomach, but that was better than everything!
In the pictures you may also notice that Owen has a Complete Left Unilateral Cleft Lip and Palate. This was another one of his many birth defects. As the weeks turned into months, we discovered so many more that we hadn't known about. He was diagnosed with the following defects:
- Tracheoesophageal Fistula/Esopahgeal Atresia
- Complete Left Unilateral Cleft Lip and Palate
- Atrial Septal Defect
- Patent Ductus Arteriosus
- Bicuspid Aortic Valve
- Coarctation of the Aorta
- Double Vessel Umbilical Cord
- Dandy Walker Brain Malformation Variant
- Choanal Atresia
- Bilateral Retinal Colobomas
- Bilateral Optic Nerve Colobomas
- Multi-Suture Craniosynostosis
- Chronic Lung Disease
- Secondary Adrenal Insufficiency
- Micro Penis
- Tracheomalacia
- Broncheomalacia
- Subglottis Stenosis
- GastroEsophageal Reflux Disease
- Two failed newborn hearing screenings
He was then clinincally diagnosed with CHARGE Syndrome.
Colobomas of the Eye
Heart Defects
Atresia of the Chonae
Retardation of Growth and Development
Genital Abnormalities
Ear Abnormalities and Sensorineural Hearing Loss
He has had a few more surgeries between then and now to try and correct some things and stop others.
January 11th was one of those surgery days. Owen went down to have his Choanal Atresia opened and also had a Nissen Fundoplication (the top of the stomach is wrapped around the base of the esophagus to prevent or lessen reflux) done.
When Owen got back up to his room, within a few minutes, he fully coded. His entire monitor flat-lined and he needed to have chest compressions and to be bagged. He was down for about 3 minutes until they got him back. They had to pull out his ettube and have anesthesia come and re-intubate him. That was one of the roughest days that we've endured during Owen's journey up to that point.
On February 14th, Owen was flown to the Mayo Clinic in Rochester, MN to have his Craniosynostosis repaired, because the neurosurgeon in Sioux Falls wasn't comfortable doing it.
When we got to the NICU at Mayo I requested that he be evaluated by the Aerodigestive Team to have them look at this overall progress in that aspect since this is a typical CHARGEr problem and a lot of their care is centered around it.
When they took him down to the OR on the 17th of February, they planned quite a few things and only did two because nobody was expecting what they found. His airway was severely injured. It was swollen and raw by the vocal cords to the point that it had no lining and all they saw was pure cartilage. As they advanced towards the lungs, they saw that his TEF repair had a pinhole in it! As soon as they saw that they put some surgical glue on it and put some antibiotics on the inside of his trachea and decided to back out of the rest. They had also been planning to do a Tracheostomy that day but were unable and he came back intubated still. They pushed antibiotics and steroids over the weekend to try and calm down his trachea and prevent infection. On Tuesday the following week they took him back down to check on his progress. It was relatively unchanged, except that his TEF was now re-opened all the way!
The next day we had a Care Conference because I requested one. We now had to figure out when he would need his TEF re-repaired and his trach done. If he had the TEF done the following day, he would need to remain intubated for a couple of weeks. I knew that his trachea wouldn't heal before that ettube came out. That day they gave me a choice between TEF repair first or his Trach and it was no-brainer. He got his trach the following day.
Fast forward two weeks.. Owen went down for his TEF repair on 3/7/17. It was an extremely hard surgery on him.. He started not being able to oxygenate and was rushed back to the OR late that evening to be placed on ECMO, or Heart and Lung Bypass. His heart, lungs, liver, and kidneys took a huge hit. They thought that his heart, liver and lungs had recovered enough, so they tried to separate from ECMO on 3/17/17, but it was largely unsuccessful. His lactate climbed rapidly and his lungs filled with fluid and blood again. We've spent the last 11 days trying to get his lungs back to a good spot and that led to the "clamp test" that took place yesterday.
Organizer
Marissa Eileen Binnebose
Organizer
Rapid City, SD
