The Story of Erikson
I share a story similar to many of our CHD families, resulting in the birth of our first "Hearts of Harvest" fundraiser, held in Tracy in 2001. By 2003, this community event resulted in the formation of a new non-profit organization that supports children with heart disease and other illnesses-we called it Hearts of Harvest Foundation-"The Giving of One Heart to Another."
Our youngest son, Erikson Ward Brown was born in 1994, with a rare heart defect called Left Ventricular Aneurysm. He was nine weeks early at birth. Chances were slim that he would live through the catheter procedure that he had on his third day of life. Doctors were puzzled because after a world-wide networking search, Eriksons defect had never been seen before. A new heart was his best chance.
On the afternoon of January 14, 1995, I had just enough faith-that of a mustard seed, as my 3-lb baby boy lay helplessly dying, in need of a heart transplant. We decided to baptize him at his bedside in the neonatal Intensive Care Unit that day and Erikson was united with Christ, yet I refused to let him go until later that evening. His physical heart had a severe heart defect. His chances of making it through the night were slim. My heart had a severe spiritual defect. I thought I was in control until my Dad said, "If it is his time, we must let him go..." Although angry, that night, God gave me a gift. His Holy Spirit wooed me to surrender my son into His hands-into God's total care. Heaven or Earth? Which will it be? Erikson awoke the next day and God gave him the ability to keep breathing. Soon thereafter, a heart from Atlanta, Georgia became available. At just over 3lbs., Erikson was small and because of the high risk involved and the fact that a transplant had never been done on a baby smaller than 5 lbs., the team of doctors voted not to do the heart transplant on Erikson.
Miracles do happen through the power of God's hand. After 77 days in the hospital we brought him home at the age of 3 months weighing just under 5 lbs...and a rainbow appeared in the clouds just as we pulled into our driveway. Round the clock care of Erikson with all his heart meds, blood work and alarms and tests continued for the first four years of his life, while also caring for a 5 year old and 2 year old. At two years of age, Erikson went from being on (7) heart medications four times a day, to none.
In the Spring of 2000, I teamed up with Pam McCain and Bonnie Smith (who also have children with heart defects) and we decided to raise money to assist families with food, housing, transportation, childcare, and other unforeseen living expenses when their child was away from home and in the hospital for an extended period of time. Taking the edge off the financial burden from families going through a medical crisis was and still is the driving force behind why I help to lead Hearts of Harvest Foundation. Emotionally, families ride a roller coaster and unforeseen financial burdens can make it even harder to cope. In its second decade, this Foundation has been the Triumph... my calling, as a result of going through this major trial twenty years ago. My baby boy is a freshman in college and is being strong in a different sort of way. I tell him...work at it with all your heart...for nothing comes easy in this life. He made it for a reason...for HOHF has helped thousands of families over the years.
Now it is his turn to make a difference as He figures out what his calling is.
We invite new Contributors, Sponsors and/or donors to join in our efforts to help families who may be going through something similar as our family did. We welcome any gift of any size at any time.
Becki B. Brown
(Mother of Erikson/Executive Director of HOHF)
The Story of Jacob
Why is it when your baby is born you count fingers and toes, google at how amazing they are and yet unaware of the possibility of a heart defect? Because until your child is born with a heart defect, it's not mentioned to you as the number one birth defect out there.
Jacob Neil Smith (my son) was born on July 17, 1994 at 11:36 PM - two weeks past the day he was supposed to arrive. It was the most amazing moment of my life after being a stepmom to four boys, to Jake finally arriving. At first glance, there were no signs of any problems but before we headed home the next day the doctor clearing Jake to leave heard something in his heart. We were told it's probably nothing but as a precaution make an appointment with a pediatric cardiologist to follow up. I quickly called to make the appointment and three weeks later Jake was seen. I wasn't prepared for what was told to us next. After going through an EKG and an ECHO, the cardiologist comes in to our room and with a very soft mild manner explained Jake had what is called Severe Aortic Stenosis. He at that time didn't tell us the extreme severity of Jake's defect or the fact he was amazed Jake was looking and doing as well as he was. He didn't tell us at the time he didn't expect Jake to live. He just simply explained the defect and directed us to go straight to UCSF where the doctors there would discern what was the best next step. We drove directly to UCSF where Jake was taken immediately from my arms and instantly sedated and analyzed by the doctor team there. At three weeks old Jake had angioplasty for the first time, which was followed by weekly appointments with his pediatrician, by-weekly appointments with the cardiologist, another angioplasty at four months old and again at age four.
Jake was born with an aortic valve which was severely deformed and practically closed causing his heart much stress to pump the blood through. Angioplasty allowed for the valve to be opened up and pump with less stress but also gave us time for Jake to grow a little more before having his open heart surgery. After 10 years of mild physical restrictions, a few procedures and numerous checkups with doctors, it became very apparent it was time to do something a little more permanent to allow Jake to run and play with all the other kids. So in 2003 our cardiologist sat us down and discussed our options and in January 2004 Jake was taken in for what is called the Ross Procedure. His bad aortic valve was cut out, his pulmonary valve placed on his aortic valve and a conduit placed on his pulmonary valve. It was the longest seven hours of our lives waiting for the pager to buzz and tell us Jake was in recovery. Hours of pacing the floor and looking at the clock. Hours on my knees in prayer asking God to please not test my faith today - to watch over Jake and the doctors and for all to be alright. The procedure went well; he recovered in the hospital in 7 days instead of 10 and home we went. Since this time, Jake has been monitored by our cardiologist yearly and has very few physical restrictions. He at some point may need to have open heart surgery again to replace the conduit, but we will cross that bridge when it comes.
After meeting Pam McCain and Becki Brown, relating on so many of our life circumstances with our heart children, it truly was my heart's desire to come alongside other families at a time of crisis in their life. No family should have to worry about finances when their child is in need of medical attention. It is also my desire to bring heart disease to a more open awareness for families. You see heart disease has affected our family in multiple ways. My husband Dana passed away in July of 2004 from a heart attack. We had incredible support from family and friends during all of these very emotional times. It is our mission through Hearts of Harvest to provide financial and emotional support for families like ours. We thank God and all of our medical staff beyond what mere words can express - and we thank you for allowing us to share our stories, our experiences with you and others in an effort to be a light at a time when things can seem so dark. Thanks for ALL your support. We simply couldn't do any of this without you.
(Mother of Jacob/President of HOHF)
The Story of Samantha
Samantha was born at 9:30PM on Saturday, March 1, 1997. Pregnancy, labor and delivery were all fairly easy and uneventful for Samantha and I. Samantha received Apgar scores of 9 and 10 from the nurses in the delivery room. Samantha was our second child and our first girl (we now had one of each).
Sunday morning brought the first signs that all was not well, Samantha became very sleepy and really did not wake up for anything. Late afternoon just after nursing Samantha, which was no easy task, Margaret our nurse came to check on us. Margaret asked if she could take Samantha to the nursing station while I got ready to go. My husband and son were on their way to the hospital to bring Samantha and I home. I noticed that the nurse watched Samantha breath and listened to her heart. At the time I thought nothing of it, but I know now that our nurse had picked up on Samantha's rapid breathing and newly formed heart murmur. My husband and son arrived twenty minutes later but Samantha had not been returned to our room.
To our shock, the staff was working on Samantha and checking her vitals. They were trying to make her comfortable. She was now under some sort of oxygen tent and seemed to be laboring to breath (she actually looked gray). The nurse informed me that the pediatrician was on his way and would talk to us when he got there. When the doctor arrived, he assessed our baby girl and called Oakland Children's Hospital for transport. He told us that she had a heart murmur that wasn't present earlier, and needed to go to the local Children's hospital to have a cardiologist look at her.
At this point I had my husband take our son to a neighbor’s house so we could follow the transport. It was about two hours later that the transport team arrived. I just kept thinking she is really OK and that they are just being extra safe. After several x-rays, IV lines, and a difficult intubation, our sweet baby girl was ready for transport. This process was not at all quick. It took them about three hours to prepare Samantha for transport. Steve and I followed behind the transport ambulance the best that we could.
It was just after midnight when we arrived at Oakland Children's Hospital. We were still hoping for an easy answer to what was happening to us and to Samantha. We were in the waiting room for only a few minutes when the cardiologist came to get us. When he asked us to follow him to a meeting room our hearts sank; we knew this wasn't good. He told us Samantha had a very serious congenital heart defect: Hypoplastic Left Heart Syndrome. The cardiologist, Dr. Saba, let us know that we were going to have to choose one of three options for Samantha's medical treatment. The first option was called 'compassionate care'. If we chose this, the hospital would give Samantha medications to keep her comfortable and send her home. She would live a few more days or maybe a week. This was not an option we could live with. The second treatment option was a heart transplant. This would mean waiting for an infant heart to become available, unfortunately many babies die waiting. The third and final option was a series of palliative surgeries beginning with the Norwood. This was a set of three surgeries that would change the way Samantha's heart worked. Dr. Saba told us to choose what we felt would be best for our family, but we needed to make a decision soon. It only took us a few short moments of fear, tears and some indescribable inner strength to choose the three-stage surgery option for our baby girl. This was the most proactive way to handle a problem that we did not fully understand.
Samantha is now a teenager, and doing well. Altogether she has only spent about thirty-five days in the hospital, which is a remarkable blessing. We thank God for the gifted medical staff that has cared for our daughter, and for the opportunity we have to share her story with you and others. We can only pray that her story can provide hope for many others.
(Mother of Samantha- Finance Director of HOHF)