Life Changing News - Finding out our baby has HLHS
- Jade Fedele
- Jun 28, 2017
- 11 min read
Asalamu Alaykum! I pray that you all are doing well and are in good health. I would like to share with everyone our personal experience of finding out that Zakariya has HLHS. This is something we have often been asked but, until now, it was difficult to express in coherent thought. Right now, however, I feel I have enough distance from the intense emotions following the news to be able to share our story the way it deserves to be explained.
As you know, I am pregnant with our first child, a little baby boy! Zakariya is due on September 15, 2017, although this date will likely change depending on when the doctors feel it is best to induce me. My husband and I were married in October 2015 and wanted kids as soon as possible, but we decided that it would be best to wait until the time was right before trying to start a family. After getting my Bachelor's degree in December 2016, it finally seemed like a good enough time for us & it sure didn't take long!
By January 8, 2016 I took a pregnancy test and it was positive!!
I was only 4 weeks and 2 days pregnant at the time.
Nothing replaces the intense feeling of learning that you will be a mother or father for the first time. Needless to say, we were extremely blessed to have had such an easy experience to get pregnant on the first attempt.
I went for my very first OBGYN visit and ultrasound at 8 weeks.
By this point, he was no bigger than a kidney bean! He was our little bean.
We wanted to be safe and wait before telling everyone the big news, but 2 days later on Feb. 3, 2017, we decided to publicly announce that we were expecting!
My next routine visit to the doctor was at 12 weeks and everything was progressing as expect, extreme morning sickness and all, and then again, at 16 weeks. As most mothers already know, not much happens in these first trimester visits (beside getting the 8 week ultrasound). Although the baby has incredible growth between 8 weeks and 18 weeks, the baby is still smaller than a lemon. However, we would soon learn to miss these normal visits in the weeks to come.
Where Our HLHS
Journey Begins
On April 21, 2017, we scheduled our second ultrasound. By now I was 19 weeks pregnant, which meant that the baby was big enough to finally see the gender!
On a side note, there are some things that bug me about medicine and technology today. For instance, if you find out you are pregnant at 4 weeks you have to wait a full 15 weeks to know what you are having! That's two and a half months of anxiously waiting to know if you should think of boy names or girl names, buy blue onesies or pink onesies, and worst of all is not being able to even create a mental image of what your baby will look like.
For some reason, me and my husband were convinced that our first baby would be a girl.
Needless to say, we went to the ultrasound with high anticipation.
We decided to do the 'trendy thing' and wait to find out the gender with family at a gender reveal party.
When the ultrasound was looking for the baby's sex she told us to look away and then at the end she secretly wrote the gender in an envelope for us.
During the same appointment for our baby's anatomy scan, the technician also mentioned that it was hard to get a good image of everything, because the baby was moving too much, and that it wasn't uncommon.
In the office visit after with our OBGYN she expressed the same casual concern.
She assured us it was probably because of the baby's position making it hard to see all 4 heart chambers and that we should see a specialist for a follow-up ultrasound soon.
Later that afternoon, we hosted a gender reveal party and everyone finally found out that it was a little boy!!
At the peak of all this excitement, we went to the follow-up ultrasound at another hospital (Ochsner West Bank) on May 1, 2017 at 20 weeks.
After a long, silent hour the ultrasound was complete but the MFM was still unable to see all the chambers of his heart. She said she suspected it might be a complex cardiac defect called Hypoplastic Left Heart Syndrome, but not to look it up & worry ourselves but to wait for a Pediatric Cardiologist to have a look.
It felt like our beautiful picture of a perfect baby was crashing down... but there was still a chance that they were wrong.
Two days later we were at Ochsner Baptist Children's hospital in New Orleans to meet with Dr. Lara and get a fetal echocardiogram. The echo was another long hour of dreadful silence as the doctor tried his best to see all the different angles of Zakariya's heart before finishing and speaking privately with us.
Our Baby has a Defect?
“So be patient, with beautiful patience.” [Surah al-Ma’arij (70):5]
As we sat in the office, unknowing of the results but hoping to hear it was all a misunderstanding and be on our way, our anxiety grew. Dr. Lara entered the room with diagrams of the heart but before starting he asked some more questions: "Are you both sure that neither side has a history of congenital heart defects in the family? And you don't smoke? Do you drink or do any drugs?" To which the answers were no, no, and no. Then he asks, "Is this your first child?", as if to say "How can I break such terrible news to such naive, young parents?
This is the moment that he laid down the diagrams and began the long explanation of how our son has a severe congenital heart defect known as HLHS, Hypoplastic Left Heart Syndrome.
All I can remember feeling is numb, almost as if I wasn't in my own body any more. It all just seemed so unreal . . . We sat in disbelief and silence as the doctor explained how the heart is supposed to work versus how our babies heart works. At the time, it seemed like he wouldn't stop talking but in retrospect it wasn't a long encounter at all, it just felt like it.
“Be patient over what befalls you.” [Surah Luqman (31):17]
Our silence wasn't out of ignorance (I did go to nursing school after all). We were more or less waiting for the silver lining, somewhere, in what the cardiologist was saying . . . as if it wasn't true and our worst nightmare wasn't happening as we sat there.
He told us that, basically, HLHS is when the left side of the heart is severely underdeveloped. It requires a minimum of 3 complicated open-heart surgeries to re-route blood flow, allowing half the heart to both pump blood to the lungs and to the body. The first one (called the Norwood Procedure) is done in the first week of the baby's life, and is considered the most difficult of the three with only about ~67% survival rate.
However, after the first procedure, the survival rates jump to ~90%. The second (called the Glenn procedure) will happens when the baby is about 3 - 6 months old. The third (called the Fontan procedure) happens between the ages of 2 - 4 years old. Once he was sure we were following him, he went into much more detail about each surgery and even the history of the procedures.
I continued to stay silent while he explained everything, waiting to hear that it was no problem and he would be fine.
That wasn't the case. There is no cure for HLHS and nothing can be done before he is born to help his condition.
The only options available were to go forward with the pregnancy, knowing that multiple palliative surgeries and long hospital stays would be required; have the baby and let him pass away in the first week of life without intervention; or get an abortion. It was obvious that we needed to give him his best chance, so we chose to continue and have the procedures. I mean, after all he was moving around, we already chose his name, and we were so in love with him that the thought of an abortion was completely off the table.
“Allah does not intend to burden a soul beyond it can bear”
[Surah al-Baqarah (2):286]
I hate to speak for my husband but I feel we shared the same sentiment at the time. After the doctor finished and asked if we had more questions, my husband sat there coldly, unable to express any emotion -- positive or negative. I tried for a little while to act like it hadn't hit me like bricks to the face, and rationalize what the doctor was saying. Looking back it must have seemed foolish to stay strong when no one expected us to be.
But he wasn't finished . . . Unfortunately, not only are none of these surgeries a cure, there isn't a guarantee that they will be successful and he may still end up needing a heart transplant at some point in his life. He would also likely need a heart transplant if his condition gets any worse before he is born. He explained how the Norwood Procedure has only been done since the 1970s, so much of the progression of HLHS in adulthood is still unclear.
The doctor also informed us that other parts of his body may react badly to the surgical procedures over time and that some people need a liver transplant as an adult.
It was obvious that for the rest of Zakariya's life he will have to see a cardiologist in order to monitor his heart's progress.
So there it was . . . all out in the open. He had said exactly what we didn't want to hear. That not only was there a problem with our precious baby, but that it was a serious one. "Any more questions?," he asked. And then the fog cleared and I started with a myriad of thoughts. "Can I still deliver him? What do I have to do differently? Will you take him from me when he's born? Will he look or act different than other babies?", etc.
In response, he told us that my pregnancy should continue as planned and that I shouldn't have any problems with his delivery. HLHS babies are born just like any other baby and look perfectly health. In fact, some parents are completely unaware that there is anything wrong with their baby's heart until their condition deteriorates.
This definitely isn't the ideal situation though. He tells us that after the delivery it is crucial that they give him prostaglandin via IV as soon as possible. We will be able to have people in the room and hold him for a little while, but he has to go to the NICU for the IV and medicine. Without this medicine an artery (known as the PDA) leading from his heart that is open while he is in the womb, will close and it would make his condition critical.
Zakariya would also not be a candidate for the 3-staged surgeries if this happened. He then tells us that while I should deliver at Ochsner Baptist, his first surgery will be done at Ochsner Children's. Therefore, they will have to transport him to the other hospital after the first day he is born to have the surgery around 3 or 4 days old. This was hard to hear, and I haven't fully accepted it to this day because no mom wants them to take their baby and then move them somewhere else.
Then, Dr. Lara looked at me, with my stern face on, and tried relate by saying that when his kids are sick he feels guilty that he did something wrong even when he knows it's no one's fault. I can still hear his words in my head of what he said after. "This isn't your fault. You didn't do anything to cause this to happen. It wasn't because you took a shower too hot or worked too hard. You couldn't have prevented it."
Tears started falling without me even knowing, because I felt like I must have done something wrong.
When a woman is pregnant, there is so much responsibility placed on her for taking care of the developing baby.
No coffee, no smoking, no lifting, eating better, sleeping more, etc. I kept thinking it was my fault, but what did I do? I took prenatal vitamins before I conceived . . . was it the Tylenol I took that one time? . . . maybe I've been too stressed with family? So, his words hit me deep and did offer some relief.
When we left the office we tried to keep our heads down to avoid eye contact. I held in my tears for as long as I could after that. I can't remember much of the blur of my fear and sadness but I know it was comparable to being on a roller coaster. I would, and still do, have days of being optimistic and hopeful followed by days of severe depression that made it hard to get out of bed. As if pregnancy wasn't hard enough, now I had to cope with the lose of a normal pregnancy. It may not sound like much to most people, but any one who has experienced it understands the feeling.
“Be patient and persevering: for Allah is with those who patiently persevere.” [Surah al-Anfal (8):46]
During this time, my husband was busy at work researching EVERYTHING about HLHS and learning as much as he could. I slowly got on board and since then I haven't stopped doing research or spreading awareness. Like most people who haven't had a baby with a CHD, I assumed that it had to be genetic or the mother must have done something to cause it. To learn that they often don't know the cause and that it is only slightly linked to genetics was a huge surprise. We had basically been randomly selected to be the parents of an HLHS warrior.
Through our plunge into researching HLHS, and attempting to become pediactric cardiologist ourselves overnight, we learned a lot about what to expect. Generally, HLHS babies look cyanotic (bluish), are overly tired, and often times have difficulty feeding. If the babies don't eat enough they will have to be placed on a high-calorie formula or have a feeding tube placed in order to receive the proper nutrition and gain weight.
We looked into all of the top contending children's hospitals in the country (BCH, CHOP, TCH, ect.) and asked some of them to review our case. We looked up doctors, read research studies, watch success stories, just to find that there really isn't a lot of information on a condition that only 900 babies are born with every year. After meeting at Ochsner Children's with Dr. Peeler, a nationally renowned pediatric surgeon with higher than national average survival rates for the Norwood Procedure, we eventually settled on staying at home and monitoring Zakariya's heart as he grows.
The average stay in the hospital after the first procedure is at least 3 weeks. Zakariya would need to be monitored in the CVICU during this time to make sure he stays stable. There will certainly be challenges with my husband having to go back to work, commuting to the hospital, and staying with him as much as possible during his recovery. Once we are able to take Zakariya home he will need check-ups every two weeks to see his cardiologist.
Where Does That
Leave us Now?
I am currently 28 weeks & 5 days, and so far I have gone for ultrasounds and echocardiograms at 20 and 24 weeks. The plan is to continue to go to my OBGYN appointments as normal and get an ultrasound and echo done once a month until I deliver. As of now, Zakariya's heart looks the same and they aren't worried about anything else at the time. He was diagnosed with HLHS, atrial septal defect, and atresia of the mitral valve and aorta.
We have started to think of fundraisers to help with the cost of his medical bills after he is born. We have private insurance but it won't cover everything. The plan is to try to raise money now so that once he is born it won't be something we need to worry about. It will also help if Mohamad has to take more time off of work to help me when we finally get to take him home. Just for those who are curious, the surgeries are very complicated and require a large care team. Without insurance cost of just the first surgery and hospital stay could reach $200,000 or more. Not to mention, HLHS is a life-long condition and unexpected emergencies can happen at any time.
** Update: Zakariya's condition has worsened, please see newer posts for more info **
Please feel free to share any information on his page to help spread tolerance and awareness for CHD! Thank you all for reading our story. JizakAllah khair!
I would like to state that nothing that we post is meant to be seen as us being in despair or losing hope. It is only meant to humble ourselves and share our honest, personal story.
We realize that there are many others who are experiencing similar struggles (or worse) and our blog is not meant to belittle those situation. Instead, its purpose is to show solidarity and help friends and family understand our baby's condition.
Being a mom of a sick kid:
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