The change started almost immediately as Nate started nursing school that fall, Kim got a job at an insurance company, and 10 months later our beautiful baby girl was born, whom we named Gwen. What a joyous event this was to have a daughter after multiple miscarriages in Utah. We were happy beyond words and felt content with the life we were living….but this was only the beginning.
When our little Gwen was almost 5 months old, Kim started feeling sick and figured that she had the stomach flu. After weeks of this ‘flu’ not ending a pregnancy test was taken, which came back positive, and after visiting the doctor and an ultra sound, it was determined that Kim was not only pregnant, but 11 ½ weeks pregnant. This was an unexpected, but wonderful surprise to all of us, especially when another ultrasound a few months later showed that our little surprise was going to be a boy, a normal and healthy baby boy. What more could we ask for?
Our little boy, Beckham, was born August 1, 2007. He came into this world a big – being 12 days early, he weighed nearly 9 lbs – and beautiful baby boy. Though a little blue in color at birth, he still received good APGAR scores and was deemed ‘healthy,’ giving us no reason to suspect anything different.
About an hour later, a nurse was listening to Beckham’s heart and asked if she could take him away for a routine check-up. Kim agreed and Nate left to get big sister, Gwen, so that she could meet her new little brother. From the hallway, a doctor could be heard asking “did this mother get an ultrasound,” and Kim, unsure of who “this mother” was the doctor was talking about, listened intently until the doctor stopped at her room and asked the same question. Kim proceeded to tell the doctor that she has 2 ultrasounds and both had looked normal. The doctor’s face turned concerned as she went on to explain that when she listened to Beckham’s heart she heard a loud murmur and noticed that he was requiring oxygen to breathe and because of this, she immediately transported him to the NICU to have a cardiologist further evaluate his condition. Nate returned quickly to the hospital after Kim’s frightened call and arrived in her hospital room at the same time as the cardiologist coming to bring us the news.
We’ll never forget the cardiologist’s expression-less face as he walked into the room and spoke four harsh words: “I have bad news,” then went on to tell us that Beckham had a very serious and rare heart condition called Mitral Valve Stenosis – a rare cardiac anomaly in which the mitral valve is narrowed, stiffened, and in his case, incomplete. Beckham’s odds for living were almost non-existent with this sort of defect, and valve replacement was not an option for one so small. The only option that was available, was to transfer Beckham by ambulance to another hospital that night, and perform a procedure (an Atrial Septostomy) to relieve the pressure in the left atrium if his heart.
The next morning, all of the pediatric cardiologists in the Des Moines area met to evaluate Beckham’s condition after the procedure, and found that the Atrial Septostomy had done its job – relieving pressure in the left atrium – but new problems were found in the process – both the right and left sides of the valves in his heart (Mitral and Tricuspid) worked improperly and leaked severally (they rate the severity of the leakage on a scale 1 - 4 and Beckham was at a 4...most severe). All of this combined new information was out of the expertise of the Des Moines Cardiologists and 5 days later, Beckham, was transferred by life flight to the University of Iowa Children’s Hospital, where they were more equipped to handle children like him. It was decided soon after arrival that there was only one option that would save Beckham’s life….a heart transplant.
What a difficult and frightening concept this was for our little family: knowing how sick and unstable our child was, coming to grips with the knowledge that the only thing that would save our baby’s life was the loss of another, understanding that a heart small enough for a newborn was rarely come by (30% chance, with the average waiting period was usually six months at the least), and knowing that Beckham’s current heart was failing fast. With this, we did the only thing that we could…pray. Pray that Beckham’s heart would stay strong until his precious angel heart arrived, pray that the doctor’s hands would be guided in his care, and pray that someone would chose to save a life and take a tragic, heartbreaking event, and turn it into a miracle.
Ten days later, at the age of sixteen days, Beckham received his precious gift of life, a new heart. As the surgical team pushed our beautiful ‘blue’ baby, now pink because of his new heart, back into his ICU room, they made the comment that his new heart immediately began to beat without any assistance from machines when it entered Beckham’s chest. “It just wanted to beat,” were the exact words. We couldn’t agree more as we watched our Beckham take breaths that no longer required the aid of machines, or as we felt his pulse that beat strong throughout his body. This new heart truly brought life into our son.
After an incredibly fast recovery, three weeks after transplantation, Beckham, was released from the hospital and allowed to go home. He was the first infant transplant patient ever (in the University of Iowa transplant program) that went home without any tubes, including feeding or breathing, and was even able to nurse and take a bottle (another first for an infant transplant patient). He continued to remain a ‘first’ child as he made leaps and bounds rarely demonstrated by a transplant baby and hit every milestone, remaining almost unaffected, healthy, and nearly hospital free, throughout his first year of life (mainly due to our lives spent inside, away from any germ filled area). There was no words to describe how blessed we felt after our baby had such a hard start to life.
We celebrated Beckham’s first birthday in Utah surrounded by friends and family, and enjoyed a wonderful vacation as a family. A few days after returning home our daughter Gwen, came down with the Coxsackie (hand, foot, and mouth) virus, and although quite ill for a normal child, she overcame the illness in just over a week. Beckham also contracted the virus and unlike Gwen (because of his compromised immune system from is anti-rejection medications), was not able to recover so quickly, but required a 17 day hospital stay. This was a definite wake-up-call for our family, reminding us how fragile Beckham’s condition could be when taken over by an illness. We hoped that this would be a one-time event, and something that we would not have to experience again in any form.
Beckham seemed to make a quick jump back into his old self as September ’08 started. Nate began his last semester of Nursing school, Kim started teaching aerobics again, and the rest of our time was spent living our lives like a normal family. How nice it was to finally feel free after spending almost an entire year indoor, trying to Keep Beckham away from anything that could make him sick.
At the end of September, Beckham began to act strangely – lethargy, vomiting, refusing to eat –and had multiple, short, hospital visits. During each of them, a diagnosis was made – ear infection, Urinary Tract Infection, Gingivostomatitis (say that three times fast), stomach bug, etc . – but after being treated with some form of antibiotics, his symptoms would return. After three or four weeks of hospital in-and-outs, Beckham and Kim went up to the University of Iowa Children’s hospital for a urology appointment, where the urologist took one look at Beckham and said that he needed to be admitted, and immediately found him a room. We have no doubt that this doctor was inspired to admit Beckham because two days later, after Kim returned to Beckham’s hospital room (because of waiting outside while he was poked numerous times to find a vein suitable for and IV) she found him unresponsive, with a dazed left fixed gaze. The doctors were immediately notified and after hours of tests and medications, it was decided that Beckham had had a ‘shake-less’ seizure, caused by a stroke, caused from a blood clot and bleed in his brain.
Once again, we found ourselves in the same, yet different, situation we were in when Beckham was first born – watching as our sons life teetered on the edge of death. Panic and fear filled our hearts as we listened to the doctors explain how serious Beckham’s condition was, and how a fine line (due to having to treat both a bleed and a clot (complete opposites), while not making either worse) would need to walked while they treated him. Again, miraculously, Beckham made a full recovery, despite the fact that multiple blood clots were found throughout his body and not just his brain. He was able to finally come home three weeks later.
From November to February, Beckham was in the hospital multiple times for various illnesses (some small and some severe), but remained in high spirits, and making incredible recoveries after each visit. As our family and his medical staff hoped that we might be at the end of Beckham's illness streak, we were all surprised to find our that we were sorely wrong as Kim noticed that something seemed amiss with Beckham as his body began to horribly bruise all over.
After many blood samples were taken, lab results came back showing that Beckham's platelets in his blood were almost non-existent with a level of only 10 (normal is between 150-400). He was once again rushed up to the University of Iowa Children's Hospital, where he stayed for almost a month while the doctors tried to figure out and treat his condition. It was finally determined that Beckham had a condition called ITP (idiopathic thrombocytopenic purpura), caused from an antibody that his body had formed (probably from an previous illness) that was attacking and destroying his own platelets. Many, many treatments were administered and deemed unsuccessful during the next three months as Beckham's body refused to let go of these antibodies. He even received controversial and experimental treatments to no avail. We were allowed to leave the hospital, but with great caution as our little boy was very fragile and if he started to bleed vigorous, it would be very difficult to stop because of his low platelets. A helmet was provided for him so that he could at least protect his head.
As the end of May rolled around, we received a call from the transplant team letting us know that Beckham's platelet level had made a small, but welcomed jump, to which we also 'jumped' as we celebrated this news. His levels continued to slowly rise, but by the end of May, something again was amiss as Beckham's skin turned a shade of yellow, and he began to vomit and developed a fever. Just to be safe rather than sorry, we took Beck again up to the University of Iowa Children's Hospital, where after multiple labs, Beckham, was transferred up to the ICU, because of 'Koolaid' colored blood color and consistency, caused from critically low hemoglobin of 2.5 (normal levels are between 11 and 15) , or Hemolytic anemia . The cause of this was another antibody that was now attacking his red blood cells.
Beckham was in very critical condition as the doctor debated how to treat him. They knew that he desperately needed multiple blood transfusions, but they also knew that if they administered blood, that his antibodies would most likely destroy the red blood cells almost immediately. It was determined to again start him on the same treatments that he had already received for his ITP, but use higher, and stronger doses, while giving him small, slow, blood transfusions. This would all need to be done with strong caution, as the combination of these treatments and his Hemolytic anemia, could send him into immediate heart failure. Beckham, once again, held strong as his body resisted but his spirit held strong. He was able to leave the hospital a couple of weeks later, though in a very weakened condition (still having very low hemoglobin of only 5) and with a new diagnosis of Evans Syndrome (a very rare and reoccurring blood disorder).
It has been a couple of months since our last hospital visit and Beckham has recently surpassed his record of being out of the hospital for more than 6 weeks (something that only took a year to reach!). He currently has his hemoglobin and platelets in a normal range and is showing no visible signs of rejection from his transplanted heart. He is still on strong medications for his heart and to treat and prevent his Evan's Syndrome from flaring up at any given time, but he is tolerating these as well as possible and is looking forward to the day when he does not need to be kept away from those that could pass on an illness.
Is this the end of our story? Of course not; we know that there is much more to come, much more to experience, and above all, much more to live, love, and enjoy. Have we made it though this whole thing unaffected and unscathed? Of course not; we are much different people then when this journey began, but much better people. Every day brings us the opportunity to laugh, cry, and thank our Heavenly Father for all that we have been continually blessed with. Would we do it all over again? Absolutely! Beckham is worth it, all of it, everything that we have gone though, everything that we will go through, and all of the unknown's in between. His undying spirit, never ending smile, and above all, his perfect angel heart, are what make us who we are. That’s what this story is all about.