Our Letters of Hope

I am writing this letter in hopes of it reaching someone who can help my baby, as well as hundreds of other children born with congenital heart defects. I am the proud mother of two beautiful and amazing little boys. They are perfect examples of the miracle of life. They are my world, and occasionally my rocks. Many times since their births, they have put the precious meaning of life into perspective for me, and perhaps most importantly they have taught me to never think "that won't happen to me!" Because it did. After being blessed with one perfect angel from God, it never crossed my mind that when finding out we would be blessed to be parents again, that this child wouldn't be "perfect" as well. One ultrasound at 20 weeks gestational and a few minutes after that, our lives (at that moment) were turned upside down.

The doctor entered the room and started by saying that everything looked good with the baby, except for one thing…one very big thing…the heart. I remember her exact words were "something is not quite right with the anatomy of the baby's heart. You will need to go for more extensive tests at the University of Iowa Hospitals and Clinics." I could tell that she and the nurses were worried about my child, but they would say nothing more. After a few days of counting the hours, minutes, and seconds, we were seen at the U of I. That wait was full of dreaded feelings and emotions; however the best word to describe what we were feeling was terrified. I remember thinking that the heart is the single most important organ in the body; it's what keeps us humans alive and if there is something wrong with my baby's heart, it's not going to make it. And if my child is not going to make it, how will I?

Throughout this difficult and life-changing journey there were two extremely difficult days that were the worst on us. The first one was the first appointment at the U of I to find out the exact predicament our baby was facing. Part of me held onto the hope that my doctor's office had made a mistake. Maybe the baby was just turned the wrong way and they couldn't see the heart well enough. Maybe we were worried for nothing, everything would check out fine, and we would leave Iowa City as excited as the day I took the pregnancy test. Well, the denial was quickly pushed away and it became a tearful day to say the least. At that moment it was hard to think positive in any way, but looking back on it now I can recall two very positive events. One, our baby WAS going to live (however at that time we didn't know how long or what else lied ahead). Two, we learned that our older son would become a big brother to a baby boy and Mommy was officially out numbered in our house.

Following the diagnosis of baby boy Nietert, whom we named Brekin Joseph, we frequently visited the U of I for check-ups and tests. We became familiar with the wonderful and knowledgeable staff at the hospital, and learned that we were at the best place possible for having a medical issue. We quickly learned that the doctors and staff at the U of I were the finest and our entire family was in good hands. This holds true still today. I think every parent second guesses themselves and their decisions at some point, especially in regards to such a significant and crucial situation. We certainly did, right up until Brekin's first surgery. However, I talked myself into trusting God, the doctors and staff, and my baby boy to fight. Thank goodness we did just that. We now know that we definitely made the right decision and we wouldn't want our son to receive healthcare anywhere else.

The other difficult day that we faced was the day of Brekin's birth. We were so excited to meet him, see if he looked like his big brother, find out how big he was going to be, and simply hold him in our arms. However, as excited as we were about all of these things, we were once again terrified to say the least. All through the pregnancy Brekin was "safe" inside Mommy, but we knew that his heart complications would be evident once he was born. Fear of the unknown and how Brekin's body would react and adjust to life outside the womb was what we were unsure of. There were so many questions and ambiguity. Would we be able to see him after he was born or would they quickly take him away? Would we have time for pictures? Would his body appear blue from lack of oxygen? Would our precious newborn need heart surgery at just days old? How long would our hospital stay be? How would time away from big brother affect him? How would we balance our love between two children when Brekin needs so much attention right now?

Remarkably, all the anxiety that we were feeling up until this point was quickly let off of our shoulders. It turned out that Brekin and God had worked together and reached a decision. In my opinion, together, they decided two things. One, the power of prayer and believing in it is miraculous. Two, let's relieve Mommy and Daddy. After birth, Brekin showed no signs of heart failure. He only spent one day in Bay 1 of the NICU. It seemed like each hour, there was more good news about Brekin's test results, blood work, and vitals. Soon they moved us to Bay 3 for the second night. Before we knew it, they were allowing Brekin into the nursery to stay the night with Mommy and Daddy on the third night! The next bit of news literally left us speechless. We were told that baby Brekin was going to be discharged from the hospital the next day with Mommy! Yes, that was only three nights in the hospital! I clearly remember crying happy tears and then looking at my husband who had a shocked look on his face. While we were both ecstatic, there came that terrified feeling yet again. Actually, maybe it never even left! After preparing for the worst, it seemed like the exact opposite was happening. However, I didn't argue. We took Brekin home and treated him like a normal, healthy newborn just as the doctors and nurses had told us to do.

We continued to visit the U of I once a month for check-ups and tests. At first we thought that Brekin's first surgery would occur at two months of age, but with each doctor visit Brekin continued to impress the staff. We were able to hold off his first surgery until six months of age. Even then, Brekin showed no signs of needing the surgery, but with his increase in size it was simply "time" to alleviate some stress on his right ventricle.

So what we dreaded had finally come. We prepared for a two to three week hospital stay, post surgery. Once again, the prayers went out and our anxiety levels went up. We knew we had to be thankful for how well Brekin had done thus far, but just thinking about our sweet little baby boy undergoing heart surgery was, for a lack of a better explanation, heart-wrenching! All the questions, thoughts, and worries of his birth came back…including being terrified! Nonetheless, he impressed us before so we had faith and hope that he would do the same this time around. And Brekin Joseph did just that! We had our bags packed and were out the hospital doors on the afternoon of day four…post operation! Once again, Brekin and God set up a plan and made a deal!

At the first visit to the U of I, and learning Brekin's CHD, I remember being a little angry in the car on the way home. I remember questioning "why us?" We did everything right, we planned to have this baby, so why can't he be "perfect?" But it is clear to us now- the question of why. I used to think that Brekin was carefully chosen for us, but now I believe that we were very carefully chosen for Brekin. God trusted us to give him the care he needed and will need. He is in good hands. I can look back and say I wished the very first diagnosis appointment had gone differently, but I really don't wish that. Brekin has taught us so much about life since his birth. I see things differently, I think differently, I act differently, and most of all I am thankful that we were blessed with this child! We understand that our lives and the lives of our families will forever be affected by this. In the many years to come, we will continue with trips to doctor appointments, stressful tests, and dreaded surgeries. But I like to say "it is what it is…so make the best of it!"

While we adjust our lives in many ways to care for these special children, I can't help but wonder if we had more support and funding for research, if all this…the pain, the agony, the stress, the sickness…could be prevented. If it cannot be prevented, perhaps we can work for a cure. I'm not asking anyone to try to understand the lives of these children and their loved ones because unless you've lived it, you can't. I'm simply trying to get our story out there so we can raise awareness on this growing issue. If we could eliminate even one surgery for one child simply because of advancement in research and increased resources dealing with CHD's, then a difference will be made. Until then, we will continue to fight for and with our children. Brekin's CHD will never go away, but we've trusted him to fight from day one. He proved that he would and we know that he always will. Along the way, we'll be each other's rocks…in many different ways!

Thank you for taking the time to learn our story…just one of hundreds!

Filled with Love and Hope,

Amber Nietert (Brekin's mommy)