Baby Schwend Medical Expenses & Family Relocation

Blake Baker Schwend was born March 4th at 10:14 am weighing 8lbs 1oz and measuring 17inches long 
I am excited to announce that my nephew Steven Schwend, wife Tonnie, and their children, Carlos (11), Zayleigh (6), and Boston (2) are expecting another baby!  Baby Schwend is due on March 11th.  Unfortunately, at a routine 20-week ultrasound a congenital heart defect was detected by Dr. Pamela Templeton and her team at Billings OBGYN associates. From there, Steven and Tonnie were referred to Dr. Andrew Lashus who is a pediatric cardiologist at St. Vincent’s Hospital in Billings. Dr. Lashus needed to see the structure of the baby’s heart and how it is functioning and so he performed an echocardiogram.  An echocardiogram, simply put, is an ultrasound of the heart.  During this ultrasound pictures of the baby and, specifically, pictures of the heart's valves and chambers are analyzed and help the doctor evaluate the pumping action of the heart. It was here that a preliminary diagnosis of hypoplastic left heart syndrome was made.  Hypoplastic left heart syndrome or HLHS is a congenital heart defect.  Baby Schwend has a small, underdeveloped left side of the heart.  This may involve all or some parts of the left heart, including the aorta, aortic valve, left ventricle, and mitral valve. With the heart only being roughly the size of a quarter at the time of the echocardiogram, it was difficult to determine exactly what we are dealing with.  Nothing will be certain until the Baby Schwend is born but it is certain that the left side of the heart is so underdeveloped that it cannot pump enough blood to the body. 
Babies with HLHS are born with the disease.  With this condition, the only way for blood to get to the body is if it can pass back through the heart from the left atrium to the right atrium and ventricle. Then, the blood passes through the pulmonary artery and through a small hole called the ductus arteriosus that connects to the aorta. The ductus arteriosus is one of the heart structures that allow a baby's heart to function in the womb, but it starts to close very soon after birth. This prevents blood from flowing properly, which is why early diagnosis and treatment are so critical.  On November 11, the family traveled to Children's Hospital Colorado Anschutz Medical Campus in  Aurora, Colorado.  Here Tonnie, Steven, and Kam spent an entire day meeting with their health care professionals.  Another echocardiogram with more advanced equipment was performed and treatment options were discussed at the Children’s Colorado Heart Institute with doctors and experts who identify and treat HLHS.  Hypoplastic left heart syndrome treatment will require medication to start at birth as well as a series of surgeries for Baby Schwend beginning within the baby’s first week of life.  This medication helps keep the natural passage (ductus arteriosus) between the aorta and pulmonary artery open.  It is called PGE-2. It allows oxygen-rich blood and blood that needs oxygen to mix inside a child's heart. HLHS repair takes a series of surgeries, usually three, that typically take place within the first four years of a child’s life.  The family met with Dr. James Jaggers, the chief congenital heart surgeon who will be performing these surgeries on Baby Schwend. 
The first surgery, called the Norwood procedure, is performed in the first week of life. This surgery allows the right ventricle to function as the pumping chamber to get blood to both the lungs and the body.  During the Norwood procedure, the pulmonary artery and aorta are combined to create one larger path for blood to get from the heart to the body. The heart wall between the left and right atria is removed to let oxygen-rich and oxygen-poor blood mix in the heart. An artificial tube is made between the heart and the lungs so blood can get to the lungs.
The second surgery, the Glenn procedure (sometimes called a bi-directional Glenn or the Hemi-Fontan), is usually performed between 4 and 6 months of age. This surgery redirects blood from the upper part of the body away from the heart and directly to the lungs.
The final surgery redirects the blood from the lower part of the body away from the heart directly to the lungs. This is called the Fontan procedure and is usually performed at 2-4 years of age.
Following this series of surgeries, most children can have normal lives. But like any child with a complex congenital heart abnormality, he or she will need to see a pediatric cardiologist for monitoring after the repairs. Children with hypoplastic left heart syndrome will need regular follow-up appointments with a pediatric cardiologist to monitor their health. Most children will need to take medication after surgery.

For the time being Baby Schwend is thriving inside of Tonnie.  The baby has a great heart rate and is active.  Tonnie will continue regular weekly visits with Dr. Templeton at Billings OBGYN Associates in Billings.  She will also be seeing the pediatric cardiologist, Dr. Lashus monthly so he can closely monitor Baby Schwend with the echocardiogram.  The family just traveled back to the Children's Hospital Colorado Anschutz Medical Campus in  Aurora, Colorado in January to discuss the birthing plan and to tour the maternity ward as well as the cardiac intensive care unit where Baby Schwend will be born and will have open heart surgery within the first week of life.  The family will then be relocating their family to Colorado February 20th for delivery and need to stay there for at least 40 days until Baby Schwend is healthy enough to come home until the second and third surgeries.   

We are committed to fighting for Baby Schwend and giving him/her a high quality of life but also realize it is going to be a rough journey especially the first week, month, and year of life with lots of medical appointments and expenses.   If you would like to assist with the financial burden, any donation would be greatly appreciated. All funds will go directly to Baby Schwend’s medical costs and related travel expenses for Tonnie, Steven, and family. On behalf of Steven and Tonnie, Baby Schwend, siblings Carlos, Zayleigh & Boston, their closest friends, and the entire Schwend, Pisano, and Koyama families, we appreciate the outpouring of love, prayers, and support shown over the past few weeks and undoubtedly, in the months to come. Our family is working hard to stay strong. 

If you have further questions please contact Kam R. Koyama at (406) [phone redacted].  
Please do not bother Steven and Tonnie at this time.  Thank you.       

Meet Dr. Jaggers by watching the clip here:
https://www.childrenscolorado.org/doctors-and-departments/physicians/j/james-jaggers/

Learn more about the series of heart surgeries by reading the information here (some video clips included):
https://www.childrenscolorado.org/doctors-and-departments/departments/heart/programs-and-clinics/single-ventricle-clinic/single-ventricle-surgery/

https://docs.google.com/document/d/1pxrf58uTopR_AJvD6uVR_Uy4NfK38tbnmg6mi1RNcOg/edit?usp=sharing