On The Double…
- Tell us about your double surprise birth…
On Erev Sukkos, September 22, 2012, 5 minutes before the zman of Yom Tov, after a very challenging, high-risk pregnancy, which was threatened numerous times, our twin boys were born prematurely at 34 weeks. Right after they were born, the NICU team showed the babies to me and I was able to see them briefly before they were whisked away. Weighing approximately 3 pounds each, they were crying and seemed to be doing well. Nothing appeared to be suspicious…yet.
While I was in recovery, my husband went up to the NICU to see the babies. He was met with the concerned faces of doctors and nurses, while one of the twins was being examined with a Doppler for cardiac issues. After questioning, my husband was told that Twin A had a lesion in his heart and therefore they were examining Twin B as well. In addition, they seemed to be having characteristics of a syndrome. There wouldn’t be a definite answer until further testing was done.
I was still in recovery. My husband’s facial expression upon his return to my bedside told me that something was very wrong.
It was after a long, tiring day; I was very weak and still being monitored closely. I was trying to process it all: how could it be that both might be having a syndrome and had the heart lesion? I had millions of unanswered questions… (at that point I was not yet aware that they are identical twins) Meanwhile, I was reacting physically as well, with sky-rocketing blood pressure and heart palpitations with shivers. Since I was still in recovery, I was rushed for an EKG to make sure nothing else was happening.
The hospital staff was very nice and considerate about our situation and offered us a private room so that my husband could stay there with me all the time. The following morning, Sukkos day, my family and friends walked across the Williamsburg Bridge and came to visit me to the Manhattan hospital where I gave birth, but I refused to go see the babies with them. I was afraid of what the twins looked like. I envisioned them being attached to invasive medical apparatus and it frightened me.
When the babies were 2 days old, the doctors told us that their characteristics pointed to Down syndrome. A call on Hoshana Raba confirmed it. Both twins were indeed born with Down syndrome.
- In addition to Down syndrome, what other challenges did your babies face?
They were medically frail, both born with congenital heart defects.
- Describe each one’s congenital medical defects.
They both had an AV canal, a common heart defect in the Down syndrome population, which eventually needed surgical intervention to be corrected. Twin B had a slightly larger lesion than Twin A. We were told that typically this condition gets repaired at approximately 6 – 9 months of age, in order for the babies to first become bigger and stronger. This enables the surgery to be more successful and for the patient to have an easier recovery. (I was told at that point, that their heart is the size of a walnut, which makes it very complicated and risky to be worked on.) The cardiologist mentioned that right now my babies were very stable and doing well medically. When they were approximately 2 weeks old he even said, “Let alone their syndrome, I can’t believe how well they’re doing for 34 weekers.”
The twins came home when they were 4 weeks old. I had to visit the cardiologist every month until the team would decide when surgery could be considered. In the interim, my babies were doing very well. They gained weight nicely and were able to have their brissim at 6 weeks of age. The babies were named Yossi and Levi. Considering how well they were doing, I couldn’t believe that I had two cardiac babies home.
- Take us down memory lane to the early stages of Yossi’s life.
Yossi was the first one to come home at 3 ½ weeks of age, weighing barely 4 pounds. Because he was doing so well otherwise, I was given the option to take him home. I was advised that I have to make sure he gets 35 ccs of formula at every feeding – it was not optional; it was a MUST. That was very challenging in the beginning because he sucked very slowly and kept on falling asleep. However, his cardiac condition didn’t play a major role at this point yet.
- Now, take us down memory lane to the early stages of Levi’s life.
The same applied to Levi. He came home from the hospital a couple of days later than Yossi; his feedings were also slow and challenging, but the monthly visits to the cardiologist yielded positive results, with the babies gaining weight nicely.
On Motzei Shabbos January 1st, I suspected that Levi was breathing faster than normal, but doubted my self-assessment. By Wednesday, I put one baby next to the other one to compare their breathing. My doubts were confirmed. I became very nervous and called the cardiologist immediately. He told me to come see him the following morning. Since it was already 3 weeks past our previous appointment he asked that I bring Yossi along as well. With the help of my mother, we got to the doctor’s office Thursday afternoon. We were assigned to different examining rooms with each baby, where an echocardiogram was performed. The doctor then told us that Yossi’s echo looked fine, however, Levi developed a condition called pulmonary hypertension. This is a very devastating, rare condition where the pressure in the lungs is very high, therefore, the heart can not pump the blood as fast as it comes in. This results in a higher heart rate which causes the baby to breathe very fast. The doctor seemed very concerned.
In retrospect, I realize how naive I was and how serious Levi’s condition was. I can also say, since this a quite rare condition, regular cardiologists don’t have much experience in this field and we were therefore not under the proper care at the time.
As the weekend was progressing, Levi’s condition became obviously worse. He was breathing faster by the hour. By Sunday morning, his breathing was so rapid that he was not able to drink his bottle. It was impossible for him to breathe and suck. Although I was told to come in Sunday night to get him prepped for his scheduled Monday morning catheterization, I realized we wouldn’t be able to wait. We arrived to the hospital Sunday afternoon and Levi was immediately put on oxygen and had a blood transfusion. I still didn’t realize how serious his condition was.
Thus began a dramatic journey that lasted a number of years, with Levi’s life hanging on a hair, with situations of touch ‘n go becoming the abnormal norm in our lives, of code blues, of droves of doctors performing CPR, of intubations and extubations and of our own hearts fluttering in fear.
Levi had three open-heart surgeries in a time span of 3 months, each one being 4 – 5 weeks apart. His first surgery was performed on Wednesday, February 2, 2011 to close up his AV canal. When the doctor came out of surgery, he reported that Levi’s mitral valve was very distorted. He had seen something like this before perhaps only once in all his doctoring years. Thank G-d he was able to repair it successfully and was hopeful. However, since Levi was in heart failure and very sick when he went into surgery, we were told that he had only a 70% chance of survival and would most likely have to come down from surgery on an ECMO machine. Boruch Hashem, he was able to come out of surgery ‘only’ on a ventilator, but the doctors were not able to close his chest because his heart was too big. This resulted in keeping him on paralytics until closure could be considered. It was also a grotesque and pathetic sight to behold. It took until the following Monday for closure of Levi’s chest to occur.
While all of this was occurring, the doctors suggested that because the babies are identical twins, there was a valid concern that we could have a ‘copy paste’ situation with Yossi. It was something we all wanted to avoid. So, on Friday morning, two days after surgery, while Levi was still so critical, Yossi came in for an evaluation to determine when surgery can be considered for him. After the appointment, my brother met us at the hospital, took Yossi home with him for Shabbos, while we stayed with Levi in the hospital.
After examining Yossi, his doctors advised that his heart be repaired asap so as not to take the same path as his twin brother. Yossi was scheduled for surgery for Monday, February 14th. In the ICU this was groundbreaking; they never had two brothers in the same unit simultaneously. Initially, for convenience sake, the twins were going to be placed next door to each other. Upon reflection, the medical staff changed their minds; the risk of mixing up babies and medications was too great. The babies were placed on opposite sides of the length of the hallway and there were color posters on each baby’s room reading, “I Am Yossi” and “I Am Levi”.
Yossi was extubated 3 hours after surgery, while Levi continued to struggle on the ventilator. The comparison hit me in the face: Levi was a very, very sick baby. Yossi returned home two and a half weeks after surgery. Levi was extubated and re-intubated in the interim. On March 8, he was finally extubated, but his breathing was very labored due to an obstructed aorta, which can happen in 5% of cases post-surgery, due to a very enlarged heart, which resulted from pulmonary hypertension. When things finally fell into place, scar tissue situated into the aorta; this literally obstructed blood flow to Levi’s body. Doctors were hoping that with support they’d be able to hold off from additional surgery so that Levi can grow bigger and stronger; he was all of 8 pounds at that point. The hope was short-lived and Levi was scheduled for an emergency surgery, which took place on Friday, February 11th at 1 pm, to remove the scar tissue. The surgical team wanted to tighten Levi’s mitral valve as well, because they realized it was very leaky since its repair. The surgery was expected to last a minimum of 6 hours, which would take us into Shabbos. The zman was very early and we had no connection or support from anybody while this was occurring. Levi responded immediately to the surgery and was actually doing better than ever before. His doctors were extremely pleased. They told us Levi would most likely be extubated the following day, putting our hopes up high…but not for long… Within a few hours Levi developed fluid in his lungs, delaying extubation. From then, things never became better – only worse. As the days progressed, Levi’s valve became more and more leaky, to the point where it almost wasn’t working. The nature of the distorted valve made it very complicated to be fixed. The medical team had tried their hardest and didn’t believe they would ever get to this impasse. Levi’s pulmonary hypertension acted up like crazy in addition to his mitral valve crisis. His prognosis at that point seemed very bleak. It was then that I begged Hashem to please do what’s good for my child. I couldn’t see Levi suffer any longer.
After intense testing and agonizing contemplation, with no options left, the doctors decided to replace Levi’s mitral valve. This procedure is very seldom done in kids so young and of such low body weight (still only 8 lbs.) There were dual reasons for hesitation: putting a child on lifelong blood thinner is a struggle and this would now become the protocol for Levi, and when a valve is replaced in a child this young, it needs to be changed more often until the patient reaches adulthood.
Levi’s third open-heart surgery to replace his mitral valve was scheduled for Wednesday, March 13, four days before Pesach. After having been critically ill for so long, Levi was finally getting better, albeit very slowly. The situation seemed to be headed in the right direction with nurses commenting on Levi’s being more alert and not so irritable like he had been. Because Levi was doing better it was decided that I would stay with him for second days Pesach and my husband would stay at his parents with our children.
As I was packing my bags to settle in to the hospital for Yom tov, I checked with the nurse via telephone how Levi was doing. The situation wasn’t good. Once I arrived there, several ‘smaller’ issues had been resolved, like his clogged central line which had been delivering his medications and obviously couldn’t do its job when clogged. Later in the afternoon when Levi woke up, he was not doing well. The numbers on the ventilator had dropped and his oxygen level was not stable. As it was being monitored closely I suddenly noticed that Levi’s right foot was totally discolored. The nurse became extremely concerned, explaining that this was a sign of failed blood circulation to his right foot and she ran to call the doctor. Levi was heading towards sepsis; even though he was being treated with various anti-biotics, he was fighting a staphepi infection. The doctor was positive that because the bacteria was identified, he would target it with different medications. However, as the night progressed, Levi’s condition deteriorated. Upon continued intense examination, it was determined that Levi also had a clot in his mitral valve. The situation was dire indeed. I was asked to leave the room and wait in the lounge. From my vantage point I was able to see white coats running in and out of the room. A very passionate floor doctor came to talk to me, offering to call my husband to come support me. Halachically, I wasn’t sure whether that was permissible. I dejectedly walked to the Bikur Cholim room, hoping to meet somebody who could advise me. There I met one religious Jewish man. I told him my baby was very sick and I was there myself, asking whether I was allowed to call my husband. He didn’t think so because my baby was under doctor’s care and it wasn’t pikuach nefesh. So, I went back up to the ward. In the interim, the doctors had reached the surgeon who told them that taking Levi in for another surgery was not an option; he would not survive. He suggested something totally experimental, something that was never tried on such a young baby – giving Levi TPA, a clot buster. TPA is usually reserved for stroke patients, to resolve their clots immediately so no further damage would result. The risks of hemorrhaging from all major organs is always very high. Being that Levi was post-surgery and he still had central lines open, the risk was even higher. I gave my consent because there was no other option and I figured I had nothing to lose. Then the cardiologist who was on call that weekend called me into a private room and said, “Mrs. Rosner, your baby is dying. I don’t think he will make it through the rest of the day, not even the next few hours. Whoever from the family wants to be here…now is the time to come.” Teary-eyed and in a state of panic, I raced back to the Bikur Cholim room where I met the same gentleman I had seen earlier. I started screaming hysterically, “My baby is dying! What do I do? Should I still not call my husband?” He looked at me and advised that I may. I asked what I should do or recite at the baby’s bedside. He answered, “Say Shema Yisroel!” I so desperately needed someone to lean onto for emotional support, but surprisingly he didn’t offer to come join me in prayer. Only later did he apologize to my husband that he couldn’t come to the dying baby because he is a Kohein.
At this point I accepted the doctor’s offer to call my husband and after several tries at my in-laws’ home, my 15-year-old son picked up and he was told the baby is dying. He ran to shul to call my husband, who in turn, called a car service and came right to the hospital. In the interim I was sitting in the lobby sobbing. Levi’s room was besieged with medical personnel while all the other personnel from the floor, as well as social workers, tried talking to me. I didn’t remove my eyes from the entrance to Levi’s room. At one point I saw them taking in a CPR board, so I was sure they were giving it one more chance. At some point my husband arrived and the doctors apologetically told him that they’re trying their best. My husband ran to a corner to finish his prayers, not knowing what was coming. At around 2 pm doctors told us that Levi’s abdomen looked very distended and they were afraid he was hemorrhaging internally. They were going to do a scan to verify. At 4:30 they came to tell us that he was not hemorrhaging, but because his kidneys and liver shut down he had no way to get rid of his body fluids, hence the distended abdomen. At 6 pm an echo was done to see whether the TPA was doing its job. The good news was that the clot did become smaller and there was more blood flow to Levi’s heart. At 10 pm, when we were finally allowed into Levi’s room, I was shocked to see a saturation level of 100%! I questioned one of the nurses how this was possible and she said, “Mom, we’re worlds away from where we were this morning.” I then questioned how they were able to maintain and bring up his oxygen levels when the ventilator was no longer able to do its job on Levi hours ago. She told me something astounding: “Two nurses were manually bagging him for 8 hours, taking turns!”. I couldn’t believe it; the depth of their caring and belief that he could pull through were remarkable. Levi was still extremely ill, with only a 50% chance to make it. I hadn’t seen him since morning and when I did go into his room, he was unrecognizable. His body was more wiring than baby and wider than longer (reminding me of Humpty Dumpty).
On Tuesday, Achron Shel Pesach, Levi was taken off paralytics and finally opened his eyes. He had completed the TPA stint, which cannot be administered for longer than 48 hours. He was so weak that he couldn’t even lift up his hand. But from then, there was slow but steady progress. By the following Monday, after being on a ventilator for four months, Levi was finally extubated. Thus, started a long road to recovery, with lots of ups and downs, the painful weaning of Levi off narcotics and getting him to breathe on his own. On June 3rd, after being in the pediatric intensive care unit for 143 days, Levi was finally taken down to the main floor. In mid-July he was transferred to Children’s Specialized Rehab facilities. On August 15th, seven months from his initial hospitalization, Levi finally came home and reunited with the family. He was eleven months old, weighed a ‘whopping’ ten pounds, was on a 24-hour tube-fed drip and on eleven doses of medication daily.
- Is there a great gap between Yossi and Levi developmentally?
Yes; quite significant
- Why so?
Because of Levi’s rocky road medically, he was B’H saved but unfortunately came out of it damaged. Since he was ventilated for 4 months, his left vocal cord is paralyzed, leaving him with a hoarse and quiet voice, making it hard to be noticed and heard when among people.
In addition, as indicated above, there was no perfusion to his right foot at one point. This damaged his growth plates, causing a limb length discrepancy. According to doctors, his foot will only grow 30%. This condition already required 2 reconstructive knee surgeries. Limb lengthening is considered in the near future.
Levi’s general state of being is physically disabled (non-ambulatory) and verbally affected. However, his cognitive function was B’H not affected. He learns and understands and can express his needs. He is very alert and smart and understands everything that goes on around him.
- At which point did life finally settle down, or has it?
At about 2 years of age, when Levi was finally medically much more stable, life took on a new norm. B’H we are a busy, happy family with the twins keeping us entertained all the time.
- Give us a brief current update on the twins
Yossi and Levi are best twin brothers, truly caring about each other. It’s funny to see how they can carry on a conversation and nobody can understand what they’re discussing, but they totally understand each other. It always amazes me to see how passionate Yossi is towards Levi. He lives and breathes Levi. The first thing he asks when coming home is, “Where is Levi?”. He will always schlep or carry Levi to places. If Levi is not okay or cries, Yossi gets teary-eyed as well.
The boys attend 2 different school programs. Because Levi is non-ambulatory, he was not able to go to Yossi’s school. This is quite challenging because I am dealing with two different school administrations. Thankfully, Levi is doing much better physically than when he was initially placed and we hope that eventually they can both attend the same educational program.
- Can you share some final thoughts?
At some point during our ordeal we were told that the statistics of this happening, identical twins with Down syndrome, is one in a million. My husband and I look at our boys and then our eyes fall on Levi as we quietly whisper – ‘our son who died three times, yet is still alive’.
I sometimes wonder whether Hashem paired them up so that Yossi can always be there for Levi…a true Master Plan!