Like all parents we were most excited to be blessed with expecting our first baby, and at every doctor visit we listened with much joy to the heartbeat of our unborn child, loud and clear. We would never have imagined that “the heart” which brought us so much joy for 9 months would cause us so much sorrow after birth.
On January 21st 1998 our beautiful precious son Robert Omid, also known as “Sunshine,” was born at 1:15 a.m. in Madison, Wisconsin, U.S.A. My husband Robert had brought his laptop to the hospital, and with much joy we sent an Email to our friends and family, conveying to them the glad tidings that we now had a beautiful baby boy; not knowing that a few hours later we would have to send them another Email begging their prayers for the survival of our most precious son.
The reason for this was that shortly after birth we were told that they had heard a murmur in his heart, and had to wait until daylight to call the Pediatric Cardiologist to come and check on his heart. You can well imagine what we went through! At 10:30 a.m. they took an ultrasound of his heart, and told us the result would be out at 6:00 in the evening.
At 12:30 lunchtime the door of my room suddenly opened, and 3 doctors entered the room. My husband Robert was sitting at my bedside. We looked at each other, and knew this was serious. In the meantime, our precious son was in the Intensive Care Unit. The doctor put everything on the table, and told us our precious son had only 2 weeks to live as he was born with HLHS (Hypo-plastic Left Heart Syndrome), a serious heart defect.
It was difficult for us at first to take in what had happened. We thought this was no more than a bad dream from which we would soon wake up; but alas, that was not the case. The shocking new reality of our lives was being unfolded before our eyes.
The doctor picked up one of the napkins from my lunch table and drew on it the shape of a normal heart; then the heart of our son, trying to explain to us in simple language the serious condition of our son’s heart. He told us “I will give you 3 hours to decide on one of 3 options for your son: a heart-transplant; the Norwood procedure on his own heart, which required at least 3 major surgeries (but he warned us the valve on the right side of his heart was thickened, and he had serious doubts that the Norwood would work on him); or doing nothing.” The last option upset us greatly, for we would have given our lives for our child, and how could he suggest this last option? I guess this is what he usually tells parents whose babies are born with a fatal heart defect.
When Robert asked him “Can we tell you tomorrow?” he said “NO, you have only 3 hours to decide.” You can just imagine what hell we went through, trying first to take in what had happened to our precious son, then to decide what to do. He had mentioned 3 Transplant Centers to choose from: St. Louis, Missouri; Little Rock, Arkansas; and Denver, Colorado. We looked at the map of the U.S. and picked St. Louis, because it was the closest of all 3 to Madison, an 8-hours drive distant.
Finally, after 3 agonizing hours, we decided on the heart-transplant. The Cardiologist who had seen our baby came up to our room sometime after 4:00 p.m., and we informed him of our decision. He called the St. Louis Children’s Hospital in Missouri, and told them about us, our baby, and our decision about his heart, and that we were in the process of enlisting him for a Transplant, and would fly to St. Louis the next day.
My world was turned absolutely upside down. It was the biggest shock of my entire life, and truly I wonder whether I shall ever recover from its impact. He called our health insurance for us, and they said O.K. to the whole thing: the flight, the operation and the after-care for our precious son.
Robert, who as I say had his laptop with him, sent further Emails to friends and family, beseeching their prayers that we might find a heart in time. We got to St. Louis on the 22nd, one day after I gave birth, and they told us it might take 6-8 months to find a heart. Another shock!
Needless to say, my son had a prostaglandin drip. My husband found a room for me in the Ronald McDonald House and left over the weekend to go back to work. I had a very sad cry; seeing him off at the bus station in St. Louis, as I felt all alone in this world.
It was 8 hours drive from Madison to St. Louis by car. I cried day and night at my son’s bedside, and felt overwhelmed by distress. My twin brother flew in from Australia to help me with the new baby; and, poor man, he just could not believe what had happened to our son, and that he needed a new heart. My husband Robert picked him up at Madison airport, and brought him to St. Louis. He joined us in our prayers day and night for our baby, who was waiting and fighting for his life at the NICU.
Then a miracle happened, and, while sitting in the dining room of the Ronald McDonald House, we got “the call” we were waiting for on Feb. 3rd at 9:00 p.m. Dr Canter told us, “We are going to do the transplant on your son tomorrow.” I almost passed out, as I just could not believe it, and asked him to please talk to my husband. YES, 10 days after we had enlisted our beautiful boy for a heart transplant, our son got his second chance at life; and he received his “new” heart on February 4th when he was only 2 weeks old. His second birthday to us. The surgery lasted 6 hours.
He suffered a rejection a week or two after the transplant; but they treated it with powerful steroids for a week, and we finally took our most-precious and much-loved child home to Madison for the first time on March 5th. He was 6 weeks old.
During the next 18 months of his life, we made many trips to St. Louis for biopsies on his heart; but stopped them finally as they were quite invasive and too many of them. He has suffered quite a few episodes of infections because he is on anti-rejection drugs that suppress his immune system, and this makes him much more susceptible than other kids to catching infections, which sometimes necessitate his being admitted into hospital. He has suffered 2 more rejections since then and we just hope and pray he will not have any more problems with his heart.
As we were busy learning how to raise a heart-transplant child, we received another bombshell with the news in 1999 that our beautiful boy was also autistic. Yet another terrible shock!
Our precious Sunshine is now 14, and is the love, light and joy of our lives. His dad has been calling him “Sunshine” from the minute he opened his beautiful big eyes at birth, and has been singing for him the “Sunshine Song” ever since. YES he for sure is our Sunshine!
I have shed oceans of tears for my beautiful boy and just HOPE & PRAY that God’s Miracle continues, and He will let us have our beautiful son with us, as every second of his life is very precious to us. We feel very blessed to be the parents of a very-special boy, and by sharing his story with you, we are starting a Fund-Raising appeal for him, so we can take him for the lifesaving treatments and a kidney transplant to Boston Children’s Hospital in Massachusetts. PLEASE help us, so we can help our only child Sunshine.
With much love and gratitude;
his grateful parents
Robert & Shohreh Moldenhauer