At 18 weeks pregnant, we had our routine anatomy ultrasound. Of course we were excited and a bit nervous to find out the sex of the baby. After all, that would be the most eventful findings of the ultrasound, right? Wrong! The day after the ultrasound appointment, I got a call from my Obgyn telling me that she was concerned about our baby's heart. She said it looked like our baby only had three chambers in her heart! I was in shock! But I thought, okay, maybe they just didn't get a good picture of the heart. My Obgyn then referred us to a maternal fetal medicine specialist for another ultrasound. So they do the ultrasound and the whole time I'm a little worried, but more so thinking that the first ultrasound was a mistake. I was thinking that they would find that everything was okay and we would leave that appointment relieved:.
Boy was I wrong: After waiting a while for the doctor to review the scans, he came back into the room to deliver the news. "I'm sorry but your baby only has three chambers in her heart PLUS the heart is on the right side of her body instead of the left." We were crushed. He then proceeded to tell us that we needed to see a pediatric cardiologist to get an echocardiogram for the baby. I told him that my obgyn's office already made an appointment for me to see the pediatric cardiologist two weeks from that day. He says to me "Well we need to get you in there sooner than that because in two weeks you will be past 20 weeks pregnant and you can't terminate after 20 weeks" WHAT!? Terminate?! I thought to myself, this can't be happening. Terminate?...but I already love her. My husband and I were both in disbelief. It was only after delivering that crushing blow that the doctor told us that there were surgical options for our baby's situation. He made it seem very grim and only told us about it after we asked if there was anything that could be done other than termination. I told him that I would like an appointment sooner than later, not because I wanted to terminate, but because I wanted to know more about what was going on with my baby. Before we left the office we had an appointment with the pediatric cardiologist for the following week. I prayed to God, "please God, let us get a sooner appointment." So we left that place full of despair, thinking that there was little or no hope for our baby. About twenty minutes after we got home, I got a phone call from the pediatric cardiologist's office saying that they were able to get us an appointment on Friday! That was only two days away! Thank you Jesus!
Those were the longest two days of my life! My husband and I were on edge. We were worried, but praying and believing that God would help us and our baby. During this time we also decided to name our baby girl Alani, meaning little rock. We had been searching for names for a while and couldn't quite agree on one. Nothing seemed right. Then we found the name Alani! We believed that our baby would be strong and would be a survivor, thus Alani would be the perfect name for her!
That Friday, we went to the pediatric cardiologist appointment and an echocardiogram was performed. After about a two hour exam, the doctor came in and talked with us about the findings. The doctor told us that our baby had congenital heart defect. It happens in about 1 in 100 babies and there is no cause or explanation for it. It just happens, and could happen to anyone. These defects do not discriminate against race, socioeconomic status, education level or any other separating factor you could think of. It really could happen to anyone.
The scans showed that our baby girl's heart was indeed just right of midline which is called dextrocardia. Also, contrary to what the previous doctor told us, she has four chambers instead of three, but one was extremely underdeveloped and could not function well enough to do its job. This condition is called hypoplastic left heart syndrome. It also showed that both of her major arteries, the Aorta and the Pulmonary Artery derive from the right chamber instead of one deriving from the right and the other from the left. This condition is called Double Outlet Right Ventricle. The doctor also predicted that there might be some issues with her heart valves.
All of this hit us like a whirlwind and sounded awful to us. However, the doctor assured us that there were surgical options available and that our baby could live a relatively normal life if she has the procedures done. Ultimately, our baby would need three open heart surgeries to survive. The first one occurring within the first week of her life, the second one when she is between 4 and 6 months, and the third one when she is 2 to 4 years old. He seemed very optimistic about everything and we were too! He said we would follow up in about four weeks. Thank you Jesus!...
Meanwhile my husband Pete's mom and cousin, both medical professionals suggested that we look into the Children's Hospital of Philadelphia also known as CHOP. I did just that and it seemed like a wonderful place. I did some research on CHOP as well as other hospitals around the country and their pediatric cardiology rankings. CHOP ranked as one of the top in the nation! So I thought, hmmm this might be a good option for us.
About two weeks after our initial appointment the doctor sent us the report of his findings and that's when I saw some things on the report that weren't mentioned during our consultation. I gave the doctor a call to follow up and to check in about what our next steps would be. During this phone call he mentioned that our daughter's liver looked to be midline and the stomach on the left and also mentioned a term called heterotaxy. I had never heard of that, so I wrote it down, but didn't really think too much about it, because the doctor didn't seem too concerned about it and I didn't want to freak myself out any more than I already was. A few days later I decided to actually look into heterotaxy to see what it meant. Basically it means "different arrangement" where the organs in the body are arranged differently than the "norm". It was very concerning to me!
Alani's diagnosis seemed to be becoming more and more complex. I decided to call CHOP and get some information from them and see what I would need to do to receive care for Alani. Once I talked to someone from CHOP and explained the information that had been given to us about our baby, I was told that I needed to come there as soon as possible and received an appointment for the following week.
What's crazy is the day before we planned to leave for CHOP; a snow storm hit the 95 corridor! We were concerned about the weather but really, nothing could stop us from getting to that appointment. We prayed that the roads would be okay and the snow would let up. Thankfully, the roads were fine the next day and on Wednesday January, 29th, we made our way to Philadelphia from North Carolina. We arrived safely in Philadelphia and rested to prepare for our appointment the next day.
The appointment lasted all day! After an ultrasound, echocardiogram, genetic counseling session, an MRI, and consultations with both a pediatric cardiologist and obgyn, we were told that our baby does indeed have hypoplastic left heart syndrome, double outlet right ventricle, and dextrocardia, but also has issues with her mitral valve and her left and right ventricles are transposed. They also said that they are concerned about heterotaxy syndrome. This was alarming because heterotaxy is so rare occurring in only about 1 in 10,000 births and the complications associated with it can be very serious. Thankfully, it seems that our baby's heterotaxy is more so based on her heart and how it formed. The MRI showed that with the exception of her heart, her other organs look to be in the right place and look to function normally. It was still early, so they could not say definitively. They said she would definitely need the three open heart surgeries and that I would need to deliver at CHOP. That would mean my family and I temporarily relocating to Philadelphia for about two months when I reach 36 weeks. Of course we want to do everything we can to give our baby a chance, so we decided that we wanted to follow through with CHOP's suggestions and make Philadelphia our temporary home this summer.
When we returned home, I called the local pediatric cardiologist who performed the initial echocardiogram to tell him about our visit to CHOP. He said that I did the right thing by going to CHOP and that his hospital could not compete with CHOP. He informed me that CHOP has better everything! He said that if it were his daughter, she would be at CHOP. That further solidified our decision. We need to go to CHOP for our baby Alani. Her congenital heart defects are so complex and she needs the best of the best in order to have the greatest chance at a happy and healthy life.
Alani's due date is June 7th, 2014. We are working very hard to prepare our family for the temporary relocation and care that Alani will need to receive upon her arrival. We are asking our family and friends to donate towards the expenses associated with relocation to Philadelphia as well as other expenses that will accrue after the surgeries. Insurance will cover a majority of the procedures, but will not cover everything and of course will not cover our living expenses. We are also asking that everyone who reads this will pray for us and for Alani. We have faith that God will see us through this and that Alani will be a walking, talking miracle and testament of God's love.
Thank you all for your support,
Peter, Kawana, Kylei and Alani
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