29 Week Ultrasounds
- Jade Fedele
- Jul 6, 2017
- 5 min read
Today we had multiple follow-up appointments and ultrasounds to check on Zakariya and his heart.
“Verily in the remembrance of Allah do hearts find rest.”
[Qur’an, 13:28]
Fetal Echo
The first ultrasound was for his echocardiogram. We get this done every 4 weeks until he is born. The ultrasound lasts about an hour and is done to closely assess and monitor the function and structures of his heart. For his 24 week echo, we were told that there was no significant change in his condition from his initial 20 week echo (HLHS with mitral valve atresia and aortic atresia), but that his aorta was slightly more underdeveloped. We were told to schedule another echo in 4 weeks and that they would watch to see if anything changed or improved.
In today's exam, the told us that Zakariya's condition has worsened and that, on top of his underdeveloped aorta, he was showing moderate to severe tricuspid valve regurgitation.
“And remember that when you are being tested, that Allah loves you. If Allah intends good for someone, He tests them with trials.” [Sahih Bukhari, #5321]
Tricuspid Regurgitation?
To explain what this means better you should understand how the heart works. The heart is made up of 4 chambers -- 2 lower (ventricles) and 2 upper (atrium). Four heart valves open and close to let blood flow in one direction through your heart. The tricuspid valve lies between the upper and lower chamber on the right side of the heart.
The tricuspid valve opens when blood flows from the right atrium to the right ventricle and the three flaps close to prevent blood that has just passed into the ventricle from flowing backward. In tricuspid valve regurgitation, the valve doesn't close tightly and causes the blood to flow back into the right atrium during each heartbeat.
“So be patient, with beautiful patience.” [Surah al-Ma’arij (70):5]
What does this mean
for a HLHS baby?
There is no cure for Hypoplastic Left Heart Syndrome but staged palliation surgery is the best option for long-term success and survival. This approach is designed to create normal blood flow in and out of the heart, allowing the body to receive the oxygenated blood it needs.
Because the left ventricle cannot pump blood adequately out to the body, the Norwood procedure allows the right ventricle to pump blood to both the lungs and the body. This surgery is usually performed during the baby's first week of life.
However, babies with HLHS depend on a few properly functioning structures of the heart to have the best outcomes for this 3-step surgery approach:
Fully developed right chambers of the heart
Little to no regurgitation of the tricuspid valve
Properly developed pulmonary arteries
Fully functioning pulmonary valve
An open atrial septal defect (to allow the blood that fills the left, top chamber of the heart to freely flow into the right, top chamber.
It's not ideal to have neonatal surgery in order to repair the tricuspid valve, meaning he would have to wait until he is several months old to have it repaired. The tissue of the tricuspid valve is incredibly fragile at this period of life and in conjunction with the the doctor's fear about his underdeveloped aorta it may be best to avoid this all together. In addition, it is hard to tell if the atrial septal defect is open sufficiently to allow for a tricuspid valve repair until after he is born.
Unfortunately, it's also not possible to delay the Norwood procedure until after repairing the valve since it must be done early in life. The concern is also that the lungs will receive too much blood flow because of the increased pressure from the valve regurgitation.
We were told that Zakariya will likely need a special heart surgery ( called Pulmonary Artery Banding) and continue him on prostaglandin to keep his PDA open (patent ductus arteriosus), if this is the case. They would place constricting bands on the pulmonary arteries (similar to the picture) to adequately reduce the blood flow to his lungs.
“We don’t grow when things are easy,
we grow when we face challenges.” -unknown
Ultimately, we were advised to start considering the possibility of him needing a heart transplant soon after he is born. Aside from a miracle, if Zakariya's valve does not have any improvement in 4 weeks or when he is born then he will be flown the same day to Texas Children's Hospital in Houston to be place on the heart transplant list. We were told that, as of now, the average organ-life expectancy with any heart transplant is about 12 years, with it being longer (~15 years) in infants with heart transplants. If this is the case, he may need another heart transplant (or other organ transplant in the future). The recovery period after an infant heart transplant is at least 3 months.
Approximately one-quarter of infants with HLHS who are listed for heart transplantation die before a heart becomes available, and the 5-year survival among those who undergo transplantation is approximately 70% (from a 2005 study).
After browsing through CATO's (Children's Organ Transplant Association) website this afternoon to get an idea of what our options are if he needs a transplant, we were overwhelmed with information.
The estimated cost (with our insurance) came out to be $80,000, and while there is no price for saving Zakariya's life this was unsettling. . . It is also worrisome to think of the possible donor family and their loss. . . For now, we will continue to schedule our doctor appointments as usually and pray for the best possible outcome in the weeks and months to come.
“Do not lose hope, nor be sad.” [Qur’an, 3:139]
Anatomy Scan
The other follow-up appointment we had today was for his anatomy scan. This ultrasound was shorter and only took about 20 minutes.
Unfortunately, he wasn't in the best position to get a good profile picture of his face so we had to settle for a picture of his tiny foot.
After this ultrasound, we were told that despite his heart defect is growth was otherwise normal. Today, he weighed 2.15 lbs., which is a little small but is in the 29th percentile and considered appropriate for his gestational age. Since I was diagnosed with gestational diabetes recently, the worry is more that he will be too large but it is normal for babies with heart defects to be smaller.
Just like with his follow-up fetal echo, Zakariya is scheduled to have another anatomy scan in 4 weeks. If his condition is changed at that point I will need extra testing and ultrasounds every week to monitor him. The worry is that he will need to be born via c-section or I will have to be induced sooner than 39 weeks.
We have started to consider more options as we have researched. For now we will stay in New Orleans but we are trying to get things situated in case we need to move to Houston, TX to deliver. This will be very costly in the near future, so all prayers and donations would be greatly appreciated. May God bless you all and reward all those who have already tried to help us through this difficult period.
“So do not weaken, and do not grieve, and you will be
superior if you are [true] believers.” [Qur’an, 3:139]
Image of his heart
A glimpse of his cute face
Half of his profile
"Your Lord has neither forsaken you nor hated you.
And indeed the Hereafter is better for you than the present.
And verily, your Lord will give you so that you shall be
well-pleased" (Qur'an, 93:3-5).
Showing off his feet!
Comments