Transferring to Texas Children's Hospital
- Jade Fedele
- Jul 17, 2017
- 7 min read
Reevaluating Our Options
Friday I made probably one of the most difficult decisions so far in my pregnancy. Mohamad and I met with all of Zakariya's care team at Ochsner Children's in New Orleans to discuss our options with his new diagnosis of triscuspid regurgitation (see "29 Week Ultrasound"). The meeting on Friday held a much less optimistic tone than the first one we had when he was initially diagnosed with HLHS, even though that was a tough conversation to have.
Up until his most recent echo we had planned on doing the Norwood/ Glenn/ Fontan staged palliative surgeries. None of these surgeries would have "cured" him, but it would have possibly bought him more time to live without needing a transplant. At this week's meeting with Dr. Peeler I let Mohamad do most of the talking. Right before the appointment we jotted some of our main concerns and questions down because we know that every time we think we're ready we always forget when the doctor walks in.
The doctors were open to discuss whatever we wanted to know and explained why they didn't feel comfortable with doing a Norwood on a baby with his current condition and why it wouldn't guarantee a good outcome. I noticed words and phrase like "inadequate," "not ideal," "poor results," and "high mortality," being thrown around more freely than at other appointments. We were aware from the beginning that Zakariya's condition may get worse and he may not be a candidate for the other surgeries, but now it was suddenly happening for real.
Dr. Lara, Zakariya's cardiologist, was immediately concerned about the change in his condition and was honest in telling me heart transplant may be his only option once he is born. These doctors have been with us from the very beginning and their main worry was about the trauma and stress it would put on us, as his parents, to relocated to Texas. At the same time, they admitted that their facilities were still new and, while in the future they may become a transplant center, they wouldn't have the capability to care for Zakariya if he needed a heart transplant.
They did, however, offer us the option of staying close to home and delivering at Ochsner Baptist Children's Hospital in the hopes that once he is born and an echocardiogram is done that his condition may have improved.
In which case they may feel more comfortable in doing Norwood as planned. The other, more possible, option was that if he does need a transplant when he is born they could immediately arrange to have him air-lifted to Houston. This suggestion wasn't ideal but an attempt to make an impossible situation a bit easier. Which brings me back to what I said in the beginning, Friday we made the difficult decision to leave the team and family of doctors and nurses we have made since Zakariya's initial diagnosis to venture into the unknown of finding new doctors at a new hospital ... in another state ... during my third trimester. Being in a sort of limbo state this late in my pregnancy is a very uncomfortable feeling to have, but the decision wasn't made lightly.
"And He provides for him from (sources) he never
could imagine. And if any one puts his trust
in Allah, sufficient is (Allah) for him"
[Qur'aan, 65:3]
Giving Him His
Best Chance
We had discussed our options of moving for treatment since the beginning of our son's journey and we even had his case reviewed by doctors at Boston Children's Hospital. At the time, it didn't make sense to go so far away when his condition could be managed here at home. In a perfect world, his condition would have stayed the same and we could have delivered him without complications, then maybe be able to take him home after 3 weeks.
Thankfully, we have continued to save money and kept our options open in case of an emergency like this. His new diagnosis, however, has changed everything we felt comfortable with before. Prior to this we felt like Zakariya was going to be fully taken care of and monitored, but now, with the talk of having to fly him to Houston once he is born, we knew we had to discuss our options again.
Just to be thorough, the reasons we originally wanted to stay in New Orleans for his surgeries were:
- Our friends and family being close by.
- Not having to move to another city & be uprooted.
- Less financial worry during my pregnancy.
- Mohamad not needing to transfer work.
- Being able to keep all of the same doctors.
- Oschner Children's is the best hospital in Louisiana and recently developed an advanced CVICU with one of the best pediatric surgeons in the nation.
However, the factors that play into our ultimate decision to transfer his care to Texas Children's Hospital are:
- Texas Children's Hospital was recently ranked #1 in the nation for pediatric cardiology and heart surgery (followed by Boston Children's).
- Being able to stay in the same hospital and city as Zakariya when he is born.
- Mohamad being able to stay by Zakariya without having to leave me behind. (There is a high chance that I won't be in the condition to travel with them from New Orleans after delivery).
- Zakariya being able to get immediate medical care in case of an emergency. (He may be born needing a transplant but too unstable to be transferred in New Orleans)
- No delay for him being placed on the heart transplant list once he is born.
- Less traumatic than having to drive five in a half hours to be with him from New Orleans if we can't fly with him.
- Less financial stress in the situation that we have to leave our life here at a moments notice to go to Houston for a long-term stay.
- Being able to find doctors that we know and trust before he arrives at TCH.
- Regardless of whether his condition is critical or not, we have peace of mind knowing that he will still get the best care at TCH.
In the end, it was clear to us that Zakariya would have his best chance at surviving and be taken care of the best if we delivered at Texas Children's Hospital.
We are also extremely grateful that Mohamad's work has agreed to help accommodate his need to relocate to Houston.
With this concern removed, we are both able to move to Houston without having to separate before Zakariya is born.
So What Now?
After meeting with our Ochsner doctors on Friday confirming our decision to transfer care to Texas Children's Hospital, we were bombarded with things we would need to do to make this a reality. That afternoon I received multiple phone calls from TCH informing me how to move forward and what to expect -- everything from requesting medical records to setting up a full day of initial appointments in Houston.
Since then, we have reached out to other families who are going through similar struggles as well as families from Louisiana who went to TCH and whose children have had successful heart transplants. The information has been overwhelming but also very encouraging. In fact, the support we have received from the TCH community has been outstanding and it makes us hopeful for the difficult months ahead.
It is also clear that not all babies needing a heart transplant get one. There are many factors that play a role in whether a baby gets a heart and whether or not it is rejected. There is also no way of knowing how long a baby may have to wait for an organ match to become available (if ever). A heart transplant is not a cure and it is not the ideal treatment, but it may be Zakariya's only option for surviving unless his heart condition drastically improves.
The nurse that I spoke to from TCH told be to be expecting a call by the end of the week to confirm my first appointments, which should be in about 2-3 weeks. These appointments are for us to meet a new OBGYN, cardiologist, and our social worker. They will do ultrasounds and echocardiograms to have in their own records and if they believe that the Norwood surgery is an option we will meet with those surgeons. However, if it looks like he will need a transplant then we will be directed to meet with their pediatric transplant surgeons and team.
Until then I will continue to go to all of my scheduled appointments here at Ochsner Baptist. As of now, we have not decided on what we will do for housing -- whether we will get a short-term lease apartment close to the Medical Center or find something more temporary, like at an extended stay hotel. We hope after meeting with our social worker there we have a more concrete idea of what our needs will be. We were told to be officially moved to Houston by 36 weeks, which is on August 18.
We have also decided to celebrate Zakariya's close arrival by throwing him a "baby sprinkle" (instead of a baby shower) before we have to move. Most of my family and close friends have already been invited to enjoy a stress-free afternoon of baby games, cake, and snacks. The reason for a smaller baby sprinkle is because we cannot bring large baby items with us to Texas, since we will basically just be bringing one car of possessions. We have created an Amazon registry for the things we have been told we will most likely need for our HLHS baby.
That's all for now, but check back soon for more updates! JizakAllah khair!
Abu Huraira reported: The Messenger of Allah (pbuh) said,
"If Allah intends good for someone,
then he afflicts him with trials."
[Sahih al-Bukhari, 5321]
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