Discovering a Beautiful Heart

Even before Baby Brent was born - he was facing challenges.  A month and a half before he was born, his parents were told that Brent was diagnosed with a severe, rare heart condition called Truncus Arteriosis and that he would require heart surgery upon his birth.  

When Baby Brent was born, on August 14th, 2013 he had difficulty breathing.  The doctors tried to intubate him but the tube kept coming out.  They tried forcing it in and it wasn't working.  He was flown from Arlington Hospital to Children's Hospital, without his parents as his mother was not allowed to leave for at least 12 hours. His parents soon received a phone call that the Doctor's were not sure Baby Brent would make it.  His parents left Arlington Hospital as quickly as they could and rushed to Children's Hospital.  Baby Brent was a mere 5 hours old and fighting for his life.





Upon arrival at Children's Hospital, the Adams were told that Baby Brent was still in the Cardiac Intensive Care Unit and undergoing surgery.  They were also told that in addition to his heart condition, Brent was born with an abnormally small airway, which is why the doctor could not get the breathing tube inserted in is throat.  During the process of forcing the tube, the Doctor had actually torn a hole in Baby Brent's throat. With the hole, every breath he took was letting air into his body. By the time he arrived to Children's Hospital he was swollen up like a balloon. The doctors inserted chest tubes to release the air trapped in his body. With the air beginning to be released the Doctor's then turned their focus on his airway. They had a do an emergency tracheotomy, to create a main airway for him. In the end this saved his life. It's very rare for a newborn to have a trache the day they are born, but Baby Brent would soon prove to everyone that he was very special indeed.  

Over the next few days and hours, many tests were done and answers sought.  As it turned out, the damage from the initial breathing tube - his vocal cords were also damaged.  There is still no determination if Baby Brent will ever make a sound.  At this point he cannot make a single sound at all.

Additionally - his small airway also showed the need for complete reconstruction but there was no way to consider that until he was fully healed from his heart surgery - which was scheduled for the following Wednesday.  He didn't make it til Wednesday ... 

The Saturday before his scheduled heart surgery, Baby Brent went into multi-organ failure.  His heart surgeon said something needed to be done to help his heart out temporarily because his complete surgery was out of the question at this time. He decided to cut open his chest and place PA bands on his arteries to slow the blood flow to his lungs from his heart. He explained there was a risk of injuring the arteries with the bands but it was much less of a risk than the odds of him making it through his heart surgery (which were slim to none). The heart lung bypass machine is not one to take a chance with when you're playing with such short odds. Once they opened his chest they could not get it closed because of his fluid overload state. Since he was in kidney failure he retained all the fluid, so the doctors decided to leave his chest open and to put in an emergency peritoneal dialysis catheter and start dialysis immediately. Another surgery. Inserting the catheter was risky because of his state but there was nothing else that could be done, this was it Brent's only chance. He was placed on 3 different blood pressure meds, a pacer, a ventilator and was kept heavily sedated for days. With his open chest you could see his heart beating through the window. The infection risk was high with the trache, open chest & PD catheter but all of it was necessary. His chest was open for 12 days, which was unheard of in the CICU. When they finally closed it they had no struggle whatsoever which was a huge relief.

Now on top of all the near death experience's Baby Brent encountered, something just as frightening was discovered as well. The Doctor's had said that he had two small level 2 brain bleeds they thought were old, probably occurred from birth and it was nothing to really worry about. After his multi organ failure the neurologist unfortunately found a new level 4 brain bleed that was not just bleeding in the ventricles like the previous two but the bleeding went into the brain tissue which causes scarring. Level 4 is the largest brain bleed you can have and it does cause some damage. Baby Brent was having seizures, they were lasting about 10 seconds a piece and there were many of them, back to back.

Additionally, with his heart condition there is a syndrome that goes hand in hand with it, it's called DiGeorge syndrome - which Baby Brent was also diagnosed with.

On October 17th, 2013 Baby Brent was released from the hospital and allowed to go home - but still on assistance for many normal body functions.  However, the second Saturday he was home his oxygen levels were fluctuating abnormally.  The doctors flew him back to Children's Hospital via helicopter and after going back and forth on options - they did an MRI which revealed that he had already outgrown his temporary heart fix. They scheduled his heart surgery for that Wednesday.  He was on the heart lung bypass machine for 5 hours during his surgery.  His heart surgery actuall went better than expected.  Within 3 days of the surgery, they were able to close his chest back and within 5 days, he was off the handful of medications they had given him to stabilize his functions.  His recovery seemed to be going better than expected also.  





Just 2 weeks after his heart surgery - as they prepared to take Baby Brent home again, they were yet again faced with another challenge.  It was discovered that Baby Brent had an extremely rare 1% diagnosis from the DiGeorge syndrome - he completely lacks T-cells.  He is now diagnosed with "complete DiGeorge".  At this point it is determined that Brent needs a Thymus Transplant or alternative Bone Marrow transplant, as soon as possible. They're available on a research basis at Duke University in North Carolina.

Baby Brent was allowed to go home but lives in a "bubble" of sorts at this point.   The medical world sees Baby Brent as a "mystery".  It's rare for a child with DiGeorge & no t-cells to have a trach too. They still don't have an explanation as to why he was born with a small airway- it's not the typical side effect that is associated with DiGeorge or his heart condition.  Infants with complete DiGeorge, like Brent, usually don't live past the age of 2; the fatality isn't just due to the lack of t-cells/ immunosuppressant, it's also the hypocalcaemia that takes part in it.

At the end of January, 2014, Baby Brent stopped breathing in the middle of the night, he turned pale white, blue lips, unconscious and when you lifted his arm it fell right back down, no control.  His parents called 911 and recalled every step that their trach nurse had taught them over and over in the hospital. They had practiced for situations exactly like this one. They tried to resuscitate him and kept "bagging" him to keep oxygen flowing through his body.  After arriving at the local hospital, while waiting for the helicopter, Brent's parents decided to change his trach out. As soon as they began all they could see was blood coming out of his stoma. This is NOT normal at all. His old trach had blood clotted all through it which was blocking his airway. They suctioned him and were pulling out bright red blood; something was bleeding inside of him. After scoping Brent when they arrived at Children's Hospital - they found out that his trach rubs against his trachea and just rubbed so much that it popped a blood vessel which is where the bleeding was coming from & made a clot below his trach.  Baby Brent was once again sent home (they next day!) with a newly positioned trach.





As of February 2014, Brent is tolerating up to 2 ½ hours straight off his vent, completely breathing on his own, no oxygen, nothing!!!

As of March 2014, Brent's cardiologist said his heart looks perfect:) He's healed beautifully from heart surgery and his heart has thinned out to normal!!! His pulmonary arteries have opened up from where they had to put the bands on it when his heart condition took over and put his body into multi-organ failure.  He'll need future open heart surgeries but for the next 2-3 years his heart should not be an issue. 

As of April 2014, Baby Brent will need either a Thymus transplant or Bone Marrow transplant- both requiring donors- to save his life. Someday soon someone has to say "yes" to organ donation "“ both the thymus & bone marrow are from donors who are living. The thymus tissue comes from a heart baby 6 months or younger who has an enlarged thymus in which the heart surgeon would need to cut down to perform the surgery. Most of the time this extra tissue is just thrown away- this is the same tissue that will save Baby Brent's life. Bone marrow can be given to the National Bone Marrow Database & used for any child or adult.

Baby Brent is home now. Fighting fevers and small things with antibiotics. His parents are preparing for the next journey they must face. The doctor's have decided that the bone marrow transplant is not the best option for Baby Brent but their options are very limited as is their time. Doctors have never seen an exact kid like Brent EVER. In the past 20 years there have been 2 Bone Marrow Transplants done to fix t-cells and even those 2 patients weren't completely lacking t-cells. It's terrifying that there is no success story to compare Baby Brent to.




He has come a long way.  His Mother, Father and big sister have been through so much in less than a year.  They have made it with lots of love and lots of prayer but their journey is not over.  They have incurred astronomical medical bills and the expenses are overwhelming for their young family.  Additionally - baby Brent requires 24 hour care and cannot be exposed to other children - as in a day care, etc.




You can read his full story here:  http://discoveringabeautifulheart.blogspot.com/?m=1

Please help their family.  




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Organizer

Heather Frye 
Organizer
Fredericksburg, VA
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