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Braden needs a heart transplant and has other disabilities. Funds are being raised to improve his quality of life so he can live as normally as possible and have access to everything he needs to improve everyday. Here is his story:
Braden was born December 7th, 2009. He was diagnosed in utero with
Coarctation of the Aorta (CoA). After he was born, things seemed to
improve and we were sent home from the birthing hospital. Two days
later, December 14th, 2009, we saw our pediatrician for a routine
check-up. Dr. Setia discovered Braden had no palpable pulses in his
legs and we were immediately sent to Pediatric Cardiology Services,
the office of Dr. Videlefsky’s office. Once arriving there, an
Echocardiogram and EKG were performed. Dr. V confirmed our fears.
Braden was then transferred to Children’s Healthcare of Atlanta at
Egleston. We handed over our perfect, beautiful baby boy to the
Cardiac Intensive Care Unit staff. A few hours later, we were allowed
back into the CICU to see him. He looked so pitiful. He was hooked up
to so many machines and had IVs and oxygen. It was absolutely unreal
to see him that way. We were told the Coarctation of the Aorta was
present and they would be performing surgery.
On December 16th, at 9 days old, Braden had his first heart
surgery. The CoA was repaired. The surgeon also discovered Braden had
a Hypoplastic Aortic Arch. They did a left subclavian artery flap to
repair it. This means Braden has no artery in his left arm, they told
us his body would compensate for the loss. He struggled post-op and
remained on the ventilator longer than we expected. Once it was
removed, he drastically declined and they had to intubate him again.
He slowly began to recover again and finally made it to the step down unit.
Finally, on December 23rd, we were able to take our precious
baby home, just in time for Christmas. He was too weak to suck a
bottle so he came home with a Nasogastric tube for the majority of his feedings.
Unfortunately, on January 4th, Braden began to drastically
decline and we rushed him into CHOA. Pressures in Braden’s lungs had
changed and it revealed several VSDs in his heart also known as Swiss
Cheese VSDs. He underwent his second heart surgery on January 12th,
2010. The surgeon placed a Pulmonary Artery band to help slow the
blood flow to his lungs. After struggling yet again to come off the
ventilator, and needing to be re-intubated, we finally returned home
on January 19th. Sadly, our stay at home was short lived. Something
was not right with Braden. We made several trips into the ER for
respiratory distress. Braden was once again readmitted to the
hospital. After staying for a week, it was discovered that Braden was
micro-aspirating. He was aspirating bits of everything he ate, along
with reflux coming up from his stomach.
On March 11th, 2010, Braden underwent his 3rd surgery. He had a
Nissen Fundoplication and a G-tube inserted. The Nissen Funoplicaton
wraps the top of the stomach around the bottom of the esophagus to
tighten things up so nothing can come up from the stomach. He finally
came home, but was on oxygen due to issues with his pulse ox after all
the damage that was caused to his lungs. He remained on oxygen for 9
months. We continued to follow up with our cardiologist, pulmonologist
and Gastroenterologist. Braden had several hospital admissions from
his discharge in March until July. In July 2010, Braden underwent a
heart cath to check things over. We were very blessed to have been
able to avoid the hospital from August-November .Braden finally was
strong enough and was removed from Oxygen in November.
In December 2010, Braden had another heart cath. It revealed
that the Pulmonary Artery Band was ready to be removed. On January
11th, 2011, Braden underwent his 3rd heart surgery and 4th overall
surgery. The Pulmonary Artery band was removed, an ASD was closed and
approximately 6 VSDs were closed as well. There was some damage done
to his heart in the form of dilation and thickening of the heart
muscles. It was thought to be related to the Pulmonary Artery banding
and we were optimistic it would slowly improve as time went on. We
continued to follow up with our doctors, mainly Cardiology. In April
2012, a heart cath was done. It showed signs of (RCM) Restrictive
Cardiomyopathy but no official diagnosis was made. We didn’t get
discouraged and continued following up with the cardiologist.
In July, 2012, Dr. Videlefsky recommended we make a visit to
Dr. Mahle, Egleston’s Transplant doctor. Our lives changed in a way
they had never changed before. Dr. Mahle not only confirmed the
diagnosis of RCM, but told us our only option for Braden would be
transplant. As long as Braden remains stable, we can avoid the
transplant list but at any time, he could decline. We aren't promised
tomorrow so we live today!
We
live each day holding our breath but try to enjoy every moment we
can with him. We ask for prayers to keep our son stable as long as
possible. The doctors are projecting that Braden will be listed and
possibly transplanted within three years from when he was diagnosed.
We have faith we can go much longer than that, but again, no one
knows how long we have. As of today, October 7th, 2018, Braden has
maintained stability for SIX years! Everyone is surprised but we
continue to thank God and count our blessings. He is an active 8
year old who loves 3rd grade.
Along with the heart defects, Braden carries the clinical
diagnosis of Noonan Syndrome. This was a spontaneous mutation within
the genes. He also has hypotonia, reflux, has a feeding tube in his
tummy, mild speech delays, oral aversion and moderate sensory
integration. Now that he is a bit older, he has a grasp of what his
medical conditions are and knows how to limit himself when needed.
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