Not too long ago, on the 26th of Av, 5767, my husband Hershel and I celebrated our 11th wedding anniversary. It seems like only yesterday when we stood under the chuppah with the hopes and dreams of building a home together. Never did we envision that Hashem, in His infinite wisdom, would have us travel down the long and bumpy road of infertility and loss, the joys of foster care and the subsequent adoption of our beautiful daughter Reena. And then, years later, the wondrous birth of our first biological child Chava, who was born with Down syndrome. Since sharing our story with you back in the Pesach 2006 issue, with profound gratitude to Hashem, it is our pleasure to announce the birth of our newest addition, Rivka Bracha Esther. She was born on Purim day 5767, just a few weeks before Chava’s second birthday.

Rivka’s birth was another personal Geuloh for us. Because Chava was born with health issues, my husband and I wondered what challenges, if any, would arise with future pregnancies. With little Rivka’s birth, nine months of worry were lifted off our shoulders. Rivka is ka”h healthy and strong--and quite delightful! Since Rivka’s birth, her older sister Chava has taken many leaps and bounds in her own development. Quite motivated by her little sister (and cheered on by her BIG sister Reena), Chava, at 26 months, now pulls herself to a standing position, says a few simple words, and is, on the whole, gaining more independence.

Pre-Op with Abba

Common to children with Down syndrome, my Chava’le was born with a heart defect that needed surgical repair. Thank G-d, she had been well enough to push off this major surgery until she was a bit older and stronger. For two years, I had hoped and prayed with all my might that the defect would miraculously repair itself. But each time we saw the cardiologist, there had been no change in its condition. (This was also a good thing – it hadn’t worsened.) The prospect of open-heart surgery for my daughter weighed heavily on my mind. However, my dear mother reminded me that often times the miracles we seek, occur through the advances of medical technology. When Chava was two years old, she underwent extensive testing. A specialized team of doctors reviewed the data and determined it was in Chava’s best interest to have the surgery as soon as possible.

As Chassidim of the Lubavitcher Rebbe, we would not take any further steps until first speaking with our personal Rav--Rabbi Yossi Marlow, Shliach of the Rebbe in North Miami Beach and spiritual leader of Bais Menachem. The Rabbi first asked if we had sought a second opinion, as this was always a directive given by the Rebbe. We had in fact spoken with a second doctor, who is also a dear friend to our family, and he concurred with the first opinion. Then Rabbi Marlow, with his usual care and concern, gave my husband and me a much-needed dose of chizuk. We were in the month of Iyar, which he explained was a fitting time for the surgery, since its letters stand for “Ani Hashem Rofecha – I am G-d Your Healer.” The word Iyar is also an acronym for our forefathers Avraham, Yitzchok and Yaakov, and our foremother Rochel. All these things would, G-d willing, be a guarantee for Chava’s complete recovery. Rabbi Marlow concluded, on a personal note, that he and his wife Chana would be available to help us in any way through this time. (Indeed, the Marlows provided us with invaluable assistance.) So, with complete trust in the Ribono Shel Olam, the Healer of all flesh, the surgery was scheduled right away.

No one should ever have to go through the challenge of a medical crisis. But if you or someone you love is faced with such an ordeal, it’s important to educate yourself and reach out to others for support and guidance. When my husband and I were confronted with our two-year old daughter’s impending heart surgery, we were grateful to have family, friends, and our entire North Miami Beach community behind us. I cannot begin to describe the enormous amount of chizuk we gained from the multitudes of people who said Tehillim for our little girl, Chava Gittel Peryl, and performed Mitzvos in her zchus. Chava’s name was placed on local Tehillim lists, including Neytz HaChochma – the special needs school that our older daughter Reena attends. Her name was also floating around cyberspace through my husband’s online chaburoh. People the world over were davening for our little Chava’le.

Just days before surgery, the hospital informed us of the need to collect blood from relatives and friends, in case Chava would need transfusions during surgery. Our dear friends, Debbie and Michael (Henrietta and Samantha too!) graciously offered to host a blood drive. Posters were hung around the neighborhood informing people of the time and place of the blood drive and urging people to come out and donate blood for Chava’s upcoming heart surgery. A bloodmobile, which had been arranged through the Community Blood Centers of South Florida, was parked in front of Bais Menachem, where a crowd had already gathered to donate blood. Within an hour, so many people had come out to donate blood that another mobile was necessary. A second bus was parked across the street in front of Shaarey Tefillah, a neighboring Shul led by the well-regarded Rabbi Ephraim Shapiro. By the end of the night, both buses ran out of supplies after collecting from nearly 50 people! My husband and I were overwhelmed by everyone’s eagerness to help Chava, and we simply cannot thank everyone enough.

My husband and I had very little time to prepare ourselves emotionally for the journey we were about to undertake. We took every opportunity to speak with people who had undergone a similar ordeal and who were willing to share their experiences with us. One family in particular even shared their personal photos with us. While the pictures were graphic and very painful to view, they were extremely helpful in mentally preparing us for what we might encounter. One of the things that prompted me to record our experience throughout Chava’s surgery and recovery was to help families in similar situations and give them a glimpse of what to expect. By reading our story, I hope to alleviate some of their fears so that they may focus on the task at hand—helping the child get well and bringing him or her home!

Chava’s surgery was originally scheduled for Monday, the 26th of Iyar. We took the date as a good sign, since 26 is the gematria of Hashem’s name, Yud Kay Vav Kay. The normal hospital stay for this type of surgery, we were told, is five to seven days, so having the surgery done on Monday would give us the best chance of being home for Shabbos.

We arrived at the hospital bright and early Monday morning, at 6:00 a.m. We waited, and waited, and waited, and waited… Apparently, the surgeon was attending to a crisis on the floor and was in emergency surgery. Meanwhile, Chava was not allowed to eat or drink ANYTHING lest they come and get her for surgery right away. The nurses kept coming in every hour or so to tell us that they will soon be ready for Chava. Finally, at 3:30 p.m. they told us that the surgery would have to be rescheduled for the next day! All those hours of Chava not being able to eat or drink were horrible. However, we did our best to make peace with the situation and accept it as hashgochoh protis. A Tuesday operation wouldn’t be so bad—it was the day Hashem said Ki Tov twice! And now people would have an extra day to say Tehillim and do Mitzvos in Chava's zchus.

We took Chava home only to repeat the whole ordeal again the following morning: Getting her up bright and early, not letting her eat or drink, bathing her with a special antibacterial soap they gave us, etc. Meanwhile, our daughter Reena was being lovingly cared for by Yael Horn and family, who kept her for an extra night when we found out that surgery would be rescheduled. With all the aggravation we were going through, it was a relief to know that Reena was in such good hands.

Early Tuesday morning, my husband and I, Chava, Rivka and my mother all arrived (again!) at the hospital. My Mom lives in New York, and, without hesitation, she flew down to Miami for two whole weeks to help us out during Chava’s hospital stay and recovery period. This was a tremendous relief to us since Rivka was only nine weeks old! Since Reena had no school that day, she was at home with my brother-in-law Richard, who generously took the day off from work to care for her. It was about 6:15 a.m. when a kind nurse escorted us into the Miami Children’s Hospital pre-op area. It is a large busy room with many cubicles separated by privacy curtains. Each cubicle had a child-sized bed and two adult chairs. On the bed were a pillow, blanket, and a small-sized robe for Chava to change into. We had brought along a pair of socks for Chava to wear as well. A nurse came around to record Chava’s vitals, including her temperature, blood pressure, and weight. Then we met the anesthesiologist who listened to Chava’s lungs with a stethoscope to make sure there was no congestion. Once we received the final clearance for surgery, the anesthesiologist explained to us, step by step, how things would proceed from here. Luckily, the hospital’s procedures are done in a sensitive way to alleviate much of the emotional trauma for both child and parents. (The physical trauma of heart surgery is unavoidable.) Chava would be given a yucky-tasting but strong oral sedative, which would take effect in 10-15 minutes. Once asleep, a nurse would wheel her into the Operating Room.

Things were moving along so fast that my husband and I hardly had the time to process it all. (Looking back, it was certainly for the best!) Just as the anesthesiologist finished speaking with us, the nurse was already there to administer the sedative. Chava did not like the taste of that medication at all, and was quite upset about the ordeal. (I wondered why they couldn’t mask that awful bitter taste--this seems so simple to do--but what do I know?) After a moment or two, Chava calmed down while I held her tightly in my arms, caressing her soft baby skin. My husband sang some beautiful niggunim to her and Chava became increasingly sleepy. (If you recall from my previous article, Chava loves niggunim.) We said Shema Yisroel together and told Chava how much we love her. Finally, Chava’s body went limp in my arms. It was the scariest moment I had ever experienced. I began to cry inconsolably.

The nurse was ready to take her, but I wasn’t ready to let go. I asked for just one more minute. The nurse drew the curtains closed and gave us a moment of privacy. With tears streaming down my cheeks, I whispered into Chava’s ears how much I love her. I told her that Hashem is with her, the Rebbe is with her, and so many people are davening and saying Tehillim and doing Mitzvos in her zchus. All of these things would ensure a good outcome. I told Chava that she is such a big brave girl and that Mommy and Abba would also be brave with her. And I begged Hashem to bring her back to me healthy and strong.

It was time.

We were escorted to a private family waiting room. The small room was equipped with a working telephone, computer with internet access, couches and chairs, and a small table. I think there was a television too, but we had no interest in using it. I did notice, however, that there was no clock on the wall. Mmm… I wonder why! I looked at my cell phone for the time – it was about 8:00 a.m. We settled into the room as best as we could. We would be there for a while. I couldn’t help but think about what was happening to my little Chava’le.

Our first update came close to 9:00 a.m. Nurse Jane, who was part of the surgeon’s team, went into the OR and reported back to us periodically, about once every hour, on how things were progressing. We had actually met Nurse Jane a few days earlier, when we brought Chava in for pre-op testing. (Pre-op testing included an EKG, echocardiogram, chest X-ray, blood work, physical examination, signing consents, and consultation with the surgeon. That was a long and exhausting day!) It was very comforting to see a familiar face and we waited with anticipation for each update. Nurse Jane was pleased to report that all of the IV lines had been set up successfully. She noted that things went exceptionally smooth. Chasdei Hashem! Anesthesia was being administered without complication and the team was making final preparations before calling in the surgeon.

Chava with Dr. Burke

On his way to the O.R., Dr. Redmond Burke, chief cardiovascular surgeon of Miami Children’s Hospital, briefly came in to speak with us. (We are forever thankful to Dr. Burke and his entire team of doctors and nurses who took outstanding care of our little girl.) It gave us immense comfort to spend time with the doctor and see his G-d fearing and humble personality. We knew with certainty that Hashem would make him the right shliach to help our Chava’le. My husband was honored to shake the hand of the man who had been given such a special gift by Hashem. We wished the doctor much success with the surgery and told him that we had faith that G-d would be guiding his skillful hands.

Surgery began at around 9:30 a.m. Nurse Jane came to us at around 10:00 to let us know that Chava had been placed on a respirator to help her breathe, and also on the heart-lung machine, A.K.A. bypass, which takes over the job of the heart and pumps blood throughout the body. Thank G-d, everything was going well. Of course, there’s no sigh of relief until it’s over… The nurse would be back soon with another update.

Meanwhile, my husband and I were each immersed in our own little world. He spent much of the time learning from one of the seforim he had brought along, or emailing updates to friends and family. In fact, while waiting in the pre-op area, a surgeon peeked into our cubicle, shook my husband’s hand and wished us well with Chava’s surgery. We had NO idea who he was – until he introduced himself as a member of the Shema Yisroel online smichoh program to which my husband is subscribed. Apparently, he and many others had received an email asking people to say Tehillim for our daughter Chava. Another member of this chaburoh, Rav Dovid Engel from Yerushalayim, gave Chava’s name to the gabbai of the Gerrer Rebbe and received a brochoh for Chava’s speedy and complete recovery.

Chava in the CICU

I was busy tending to my newborn, calling family with each update, and saying Tehillim at every opportunity. Reciting the powerful and uplifting words of Dovid HaMelech gave me great comfort, and also the feeling that I was doing something truly beneficial for my child. My husband and I exchanged only a few simple words with each other. It was a tense time and we both needed to focus on our own tasks. Thankfully, my Mom was there to help ease our worries with her wise and loving words. Although we had brought along some snacks, none of us had an appetite for much of anything. As a nursing mother (thank G-d!), I had to keep reminding myself to at least drink some water. Chai Lifeline graciously offered their services in our time of need, and volunteers came to the hospital each day with a variety of hot, delicious and healthy meals. They caringly made sure we ate something so that we would keep up our strength for Chava.

The time went by, albeit slowly, and Nurse Jane was back again. She reported that everything went better than projected, the defect was repaired, and the doctor would be in shortly to speak with us. It was now about noon, and Dr. Burke, the surgeon, came with photos in hand to show us exactly what had been repaired. It didn’t quite click with me that I was viewing pictures of Chava’s heart. Imagine the precision needed to repair something the size of a baby’s fist. It wouldn’t be long before Chava would be moved from the OR to the CICU (Cardiac Intensive Care Unit) where we could finally see her.

As Chava was being wheeled from the O.R. to the CICU, the anesthesiologist and nurses transporting her stopped in the hallway so we could give Chava a kiss on the forehead. She was covered with her blankie from the neck down, so we only saw her face, which--thank G-d--had good coloring. Her eyes were closed and she seemed peaceful. We gave Chava kisses and told her again how much we love her and how proud we are of her, and how brave she is!

We waited outside for another twenty minutes or so until Chava was transferred to the CICU. Finally, we were allowed to go to her bedside. It was about 1:00 p.m. I entered the room with the resolve to be brave for her, just as I had promised. Children, especially the little ones, are so sensitive to facial expressions and body language. I knew that Chava would look to me for reassurance. I needed to show her that I wasn’t afraid. So, with a smile on my face, I approached her.

Nothing in the world can prepare you for seeing your own child emerge from the OR. Not even a graphic picture of what to expect--which we had seen--can ease that overwhelming feeling of helplessness that you experience upon seeing your child covered in tubes and wires and bandages, with loads of machines around her bed. Baruch Hashem, Chava was extubated in the OR after surgery, so we were spared from seeing her on a respirator. She was breathing on her own with an oxygen mask. Chasdei Hashem.

Chava was on strong pain medication and heavily sedated. The plan was to keep her very comfortable for the remainder of the day and into the night, waking her slowly the next morning. Every so often, as the medication wore off, Chava would cry out in pain and tense up her body. It was awful. I had never seen such an expression on her face. Her voice was hoarse and barely audible because of the intubation. (It took a long time for her voice to return to normal--I would say a good two weeks.) We played soft niggunim by her bedside continuously throughout her stay in the CICU. The power of music proved to be very healing for Chava.

The following morning, on Wednesday, the nurses began to slowly lower the dosage of sedatives. It wasn’t long before Chava opened her eyes. She recognized us immediately, which was a great relief. Chava was obviously very groggy, but thank G-d her pain was managed well. As most mischievous 2-year olds would, Chava kept reaching for the wires, wanting to pull them. We took that as a very good sign.

Post OP

Things were moving along quite well and the doctors were confident that Chava could soon be moved to a regular room on the floor. Before surgery, the surgical team had inserted several IV lines, including two big lines in her groin area that were held in place with stitches. One of these was called an arterial line. This line allowed the nurses to check Chava’s blood levels without poking her repeatedly. She also had two chest tubes for drainage. Most of these lines and tubes were removed over the course of the early afternoon hours. Removing the chest tubes is a painful procedure. They gave Chava an extra dose of morphine and sedatives in order to yank them out with minimal discomfort. The bandages were removed and the incision was exposed, covered only with steri-strips. Steri-strips are like small clear Band-Aids placed across the incision. They seal the last layer of skin and usually fall off by themselves within ten days. Gauze and bandages now covered the two small incisions from the chest tubes. A chest x-ray confirmed that her cavity was clear of excess fluids and the healing process was underway.

It had been many hours since Chava had anything to eat or drink. She had been on restriction since the night before surgery. By this point, Chava’s mouth was noticeably parched and she desperately needed to quench her thirst. As Chava became more alert, we were at long last permitted to give her some cool water. I brought her bottle from home, but was concerned about whether or not she’d have the strength to hold it up. To our relief, Chava eagerly reached out for her familiar bottle and drank from it on her own. Another milestone achieved!

By mid-afternoon on Wednesday, just over 24 hours after surgery, Chava had only one IV line in her right foot, and was ready to be transferred to the floor. There were also lots of thin wires taped to her chest, which hooked up to monitors that measured her blood oxygen level, her heart beats per minute, and her respiratory rate. Chava had a fun time pulling off the wires. The monitors were beeping out of control and the tolerant nurses kept coming back in to replace the wires. Although quite comical, it was a relief to see that our little girl was slowly coming back to herself.

We were brought into a private room at around 4:00 p.m. The room was quite far from the nurse’s station. Unlike in the CICU, where Chava had round-the-clock care with a nurse assigned only to her, on this new floor her nurse had four to six other patients in her care. This meant that my husband and I were forced into the distressing situation of tending to our daughter’s medical needs. (This too was hashgochoh protis, as we were later told that it is crucial for parents to be confident in caring for their medically needy child before being discharged.) We did not know how to handle her and we were so afraid of chas v’sholom hurting her fragile body. The main task at hand was keeping Chava on her back. This proved to be very challenging, especially because Chava is a tummy sleeper. One of the nurses suggested that we place rolled up blankets around her, which would hopefully prevent her from rolling over. It worked! The nurses also showed us the proper way to lift and hold Chava (not from under the arms!) and we slowly gained more confidence in handling her. (Incidentally, the nurses suggested that we bring oversized t-shirts from home, preferably ones where Chava could get into without lifting her arms. I called a dear friend of mine, whom my children affectionately know as Tante Malka, and asked for a huge last minute favor. Not only was Malka Hellinger readily available to alter the t-shirts so they could be fastened by snaps or Velcro down the back, she came and picked up the shirts from my home and had a handful of them ready in just a few hours. Thank you!)

Playing with Rivka

Since Chava could not be left alone for even a moment once she was moved into the private room, my husband and I would have to split the night shift, leaving my mother to care for our newborn, Rivka, in a nearby apartment provided by the hospital. The Marlows came to our aid at only a moment’s notice and lovingly cared for Reena that night while we were at the hospital. Not only did they feed her a scrumptious supper, Mrs. Marlow went out of her way to make sure it was one of Reena’s favorite meals!

By now Chava was not on any eating or drinking restrictions, which meant that we could offer her any kind of food. The key was to introduce foods back slowly. Luckily, the hospital provided her favorite treats, Cheerios and apple juice. My husband ran out to the local grocery shop to purchase some applesauce and hot oatmeal cereal. The hospital did not stock these items with a hechsher. Since she had been intubated, we thought Chava would enjoy some refreshingly cold ice cream. My husband found the strength to drive all the way back to our community to buy small cups of cholov yisroel ice cream (and some chocolate Leben – another favorite) from the local grocer. That was a two and a half hour round trip errand! As it turned out, out of all the foods we offered Chava, she would only eat the ice cream and Leben.

Sitting with Support

By Wednesday evening Chava was being given pain medication only as needed. Up until that point she had been on a morphine pump that automatically administered a dose every few hours round the clock. It was a long and difficult night for her. Chava was only able to doze off for twenty minutes here and there. The niggunim CD was playing softly near her bed, and I hummed along quietly in an effort to console her. The night seemed to drag on endlessly, but eventually morning broke.

Chava woke up Thursday morning, and despite a restless night of sleep she was in great spirits and quite eager to move around. She sat up with help and took interest in the toys around her bed, which were provided by the hospital’s Child Life program. Much like a social worker, a Child Life Specialist can provide support to young patients by talking to children, on their age level, about some of the things that may occur during their hospital stay. While Chava was a bit too young to really understand what was happening to her, this resource was especially helpful to my eight-year-old daughter Reena. Before bringing Reena to see Chava for the first time after the surgery, my husband and I arranged for a Child Life Specialist to meet Reena and answer all her questions. Although Reena was eager to visit her sister, it was our joint decision to wait until she was settled in a private room--with most of the scary tubes and wires removed. After caring for Reena overnight in her home, Mrs. Marlow graciously drove her all the way to the hospital, a good hour’s drive, so she could visit with Chava. Mrs. Marlow, and her lovely daughter, visited with us for a while and were pleased to see how well Chava was doing. Mrs. Marlow assured us that, with G-d’s help, we would be home for Shabbos, and had already been in contact with Rochel Margolin (head of Bais Menachem Bikur Cholim) to have food delivered to our home for Shabbos.

Playing with Reena

After days of being apart, Reena was so thrilled to greet her sister Chava and play with her. My three girls ka”h were so happy to be together at last… It was quite a moment! Reena had thoughtfully gone to the toy store days earlier with her Uncle Richard and had chosen a present she knew Chava would love. With much delight, and a bit of help from Reena, Chava excitedly opened her gift, which the Marlows had helped to wrap. (It was a play telephone - Chava’s favorite toy!) Attached to the gift was a beautiful hand-written card from Reena that read, “I love you and I hope you feel well soon. Someday you will appreciate it. I’m writing it with tears in my eyes. There’s a present inside. Love: Reena, Abba, Mommy, Savta, and Rivka.” (Such nachas!!!)

Chava’s strength increased rapidly and she was making great progress. By Thursday afternoon she was able to sit up on her own and move about in the large bed. Her pain had decreased significantly and Motrin was given only as needed. Still, Chava tired easily and took several long naps during the day to recharge. Later in the day, we received a welcome visit from my dear friend Helene Gassner, who came along with Sherri Dennis, a member of the NMB Bikur Cholim. Aside from bringing us a yummy hot lunch that we all enjoyed, they offered us a great amount of chizuk. At one point, a technician came in and performed an echocardiogram that took about twenty minutes. Helene and Sherri’s visit was a great distraction, even though Chava didn’t like anyone touching her boo-boo. The technician had a gentle touch and was very careful not to hurt her.

Three Weeks Later

Following a good night’s sleep, Chava awoke Friday morning with tons of energy. After a refreshing sponge bath, she was eager to come out and play. Chava had no interest in spending any more time in bed. We took Chava to the hospital’s activity room where she cheerfully played with her sisters. By noon on Friday, just four days after her open-heart surgery, the discharge papers were signed. Chava was ready to come home! Chasdei Hashem.

The Grand Biala Rebbe of Bnai Brak shlita gave Chava a beautiful brochoh. He said that Chava would have a full recovery and years from now we would all look back and laugh as to why we were even worried. It’s only been a few weeks since her surgery and Baruch Hashem we are already laughing!

Our family could not have gotten through this difficult time without the help and support of so many people. Since this Newsletter does not have enough pages to list them all, we simply offer Hakoras HaTov to our family and friends, the members of Bais Menachem, and our entire NMB community. I don’t know how we would have managed without you all. Your acts of kindness will surely hasten the arrival of Moshiach, speedily in our days.

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