Home of the Four Trans

A Mother’s Pain

I woke up crying twice ever since I heard the news 20 weeks ago that my Baby Justin has a rare heart condition that will require him to undergo 3 different surgeries within the first 3 years of his life in order to have a chance to live. The first time I cried because I had to contemplate the prospect of terminating my pregnancy. The first perinatologist I met with told me that if my child has any chromosomal disorders his prognosis would be very poor, meaning he would not have very much chance to live. And, if he were able to live, I pondered, what would the quality of his life be like? Is it fair for me to bring this innocent, unknowing child into this world to face the cruel sufferings of humanity with knowledge that his life is already at such a great disadvantage? This perinatologist had suggested that I get an amniocentisis done just to be sure if I wanted to go through with this pregnancy. Loi and I shortly discussed the possiblities of me having a miscarriage if we did so, and opted to meet with a fetal cardiologist before making any hasty decisions. The appointment would not be for another 2 days. I woke up that next morning crying because I did not want to kill my baby. Regardless of his heart condition, regardless of what I think his life may be like, I did not want to kill him. He was conceived with so much love, and it has always been his fate to be with us. This child is mine, given to me by God for a reason, and I had the responsibility to give him the life that he deserved. We met with the cardiologist and when he confirmed the diagnosis my heart fell. But, the liklihood of our child having a chromosomal disorder was very low, according to his observations. And, more importantly, our baby had a chance to live. While the cardiologist suggested that we have an amniocentisis anyway, he also mentioned that since we plan to keep the Baby either way, it did not matter.

The second time I woke up crying was just one week ago after a conference meeting with all the major players in the delivery and care of Baby Justin. I woke up crying because I knew that my little child would have to endure pain. I woke up crying because I had to face the fact that I may lose my child, maybe not that day, or in 2 years, but definitely too prematurely. The doctor had reassured me that this is only the beginning, and that children with heart conditions have the propensity to have heart failures as they get older. He had told me that our life with him will be like a roller coaster, where there will be good days and bad. He told us that there will be multiple other procedures besides the first one for us to worry about. The doctors told us that he would not be able to feed until after the surgery, and that he may have feeding problems which would keep him in the hospital longer. I knew all of this, and I wanted to hear it all again. I want them all to be as upfront as possible with me. I value truth and honesty. They were giving me all the information so that I can make an informed decision about my plans for Baby Justin. But, while all the information had helped me cope in the last 19 weeks with the preparation of Baby Justin’s coming, the information turned on me, and made me realize that it’s not just information, it’s reality. It is MY child who will be enduring this pain. I thought about the needles, the anastesia, the tubes, his disconnection from the world for the first few months of life, how his first Halloween, Thanksgiving, and Christmas will be spent either at home or in the hospital, how he’ll never be able to participate in contact sports. I thought this is so unfair, and why my child. I can’t help but apologize to him. I remember how the elders always said children should be thankful for their parents for bringing them into this world, and here I was thinking how grateful I was to be able to bring this child into the world. I thanked the heavens above for giving me the opportunity to live life with him. And, I apologized to him for the pain that I have caused him; he did not ask for any of this.

I have been strong through this entire ordeal. I’ve trained myself not to cry at the very mention of Baby Justin and his heart condition. I have channeled all that energy into preparing for his birth, hospital stay, and surgery. The truth to me is it is not only the children who owe their lives to their parents, but the the parents who also owe themselves to their children. It is not fair for me to wallow in sorrow and wonder why me, why my child? when I could use so much of that energy for the betterment of my Baby, my Nathan, and my Family. This is what gives me strength…knowing that I have this responsibility bestowed upon me, and the capability to make a difference. Deep down, I always knew that I’d have amazing children, I always knew that God would give me children who would affect the world. I just ask Him for the strength, courage, and wisdom to be able to raise them and guide them towards the right path.

But, I am only human. Guilt and fear of all the unknown has overwhelmed me on some days. On these days I’ll cry. But, only shortly because I don’t want to hurt my baby anymore.

The Official Announcement

Loi and I are very private people and have not shared this news with many people in our family or social circles. This blog is the official announcement to all those who we have not told about Baby Justin’s heart condition. Although we did not want to make baby’s condition so public, as we both felt that this is a family matter, we have come to realize through all the research that we’ve been through about congenital heart defects (CHDs) that by sharing Baby Justin’s story, we could help other families out there who also have children with CHDs. There certainly are not enough stories shared out there. But, the ones that we did find provided us with great insight into the lives of children with CHDs. It gave us hope to read about those children who’ve been through the 3 step procedure, and are living normal lives, going to public schools, and participating in activities with their friends. And, we’ve also read stories of those children not making it past their second birthdays, which break our hearts, but are therapeutic nonetheless. We’ve appreciated these stories so much, and thought that other families may make use of our Baby’s story as well.

I had to reconsider whether or not I wanted to share Baby Justin’s story without his consent with the worry that he will be stigmitized as he gets older because of his heart condition. But, my hope is, the more knowledgeable the public is about his heart condition the less ignorant they’ll be of how to deal with it.

We do not want sympathy, but we’d appreciate understanding. Those who do not fully understand the condition of our baby, or why it has occurred cannot understand the decisions we’ve made for our baby, our feelings of hopelessness and pain at times, and optimisim and joy at other times. So, it is our responsiblity to educate others in order for them to understand.

Basically, Baby Justin was diagnosed in-utero with a congenital heart disease which will require him to undergo surgery in order for his heart to function.  But, this is a chronic condition that could never be “fixed” or “repaired”.  He also has heterotaxy which means his internal organs are misaligned.  This also may require him to have additional surgeries to rectify the problem.  We will go into further detail about his diagnosis after his birth.  Please stay posted for more information.

His First Weeks of Life

I am scheduled to be induced on August 8, 2007 at St. Joseph’s Hospital at 5AM. If all goes well, I will be able to hold him for a few minutes after he is stabalized before he is sent to the NICU at the Children’s Hospital of Orange County (CHOC) to be treated with Prostaglandin in order to keep him well enough until his surgery. He will also have “lines” run from his belly button for IVs and medication. At that time, the cardiologist and neonatal team will run tests on him to confirm the condition of his heart and anatomy, as well as to determine if he has any chromosomal disorders. By August 10th, he is scheduled to be transported by ambulance to the Children’s Hospital of Los Angeles (CHLA) to prepare for his first surgery on August 13th.

After the surgery, we expect for him to recover within 1-2 weeks. But, it may take up to another 4 weeks before he’ll learn to feed again, and for his body to take the food. If all goes well, he’ll come home with us at that point. But, there is so much uncertainty right now on how his body will recover, and whether or not he’ll need additional surgeries for his heterotaxy. So, we can only hope for the best at this point.

Once baby is home, we have been directed to limit visitors and contact for 3 months for fear of him contracting any infectious diseases. So, I apologize in advance if I may seem too overprotective of my baby and forcing you to thoroughly wash your hands for 3o seconds before touching him, and requiring that you wear a mask so that you do not transfer any diseases to him. I may even ask that you do not visit. Babies are already fragile as they are in the first year of life. With Baby Justin’s vulnerbility compounded by his heart condition, I do not want to take any unnecessary risks. I do not mean to hurt your feelings or seem rude. But, Baby Justin’s health and recovery is the main priority to me right now.

This entry was posted on Saturday, August 4th, 2007 at 1:10 am and is filed under Heart Disease, Justin. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.