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A Miracle of Life: Zayed

Baby Zayed was born at 35 weeks gestation weighing only 3.12 pounds, with a cleft lip and palate and a cardiac defect. He spent 13 months in several hospitals, but multiple surgeries later he is sweet, smart, and loves his big brother Yazid. Even after surgery eating was difficult for Zayed, and he has many food allergies, so donor human milk and his mom’s expressed breastmilk continued to be his only source of nutrition for over 18 months. Zayed’s mom calls him her miracle baby!

The Mothers’ Milk Bank at Austin provides thousands of children just like Zayed with donor human milk, given compassionately by healthy lactating mothers who express milk beyond their own needs and donate it to help babies born too small, too soon, and too sick. This past year more than 1,100 mamas chose to donate milk, and more than 775,000 ounces of milk were dispensed to babies. Generous community members gave more than $225,000 to support our mission to save lives through the provision of prescribed, pasteurized donor human milk. This isn’t enough to save all babies in need, but it helped save Zayed. Read his story as told by his mother to understand how and why you can help others through a gift to the Mothers’ Milk Bank at Austin.

"Hello, my name is Mabel Leal. I am Zayed’s mother. Our story begins with our pregnancy. We were very happy and excited expecting our second child after 5 years of waiting for the “right time” to become pregnant again. We had gone through many medical issues with our first born since he suffered from food and environmental allergies and had an immune system disorder, so we waited 5 years to become pregnant again and be as healthy as possible with this second pregnancy.

Everything was going well until our 5th month of pregnancy. We received some news after a detailed check-up of Zayed’s organs. He was diagnosed with cleft lip and palate. When I heard my OB/GYN say that I could not stop crying; I was in complete shock. I was so heart broken, it literally hurt. We were receiving so much information at once, it was going in circles inside my head. Soon I understood what we would be experiencing, not only me but as a family, and what our baby Zayed would expect. I knew he would be a special boy but what I did not know was that he was going to be a special boy in God’s eyes.

We started learning and doing research about our son’s diagnoses. We read books, called many doctors, specialists, and even breastfeeding consultants since one of goals was to breastfeed this time because I was not able to do it the first time. It was recommended that I try as much as I could to breastfeed Zayed. I knew this would be a challenge due to Zayed’s condition. He would probably not be able to suction properly and we would not find out if it was even possible to breastfeed until he was born.

Weeks went by going to check-ups and other appointments. We were 35 weeks pregnant when I realized something was different, something was wrong, my belly was not growing as I expected, and I was not gaining weight anymore. I shared my concerns with my husband, my mother, and my two younger sisters. However, Zayed was still actively moving. I shared my concerns with an OB/GYN at my next check-up, who listened to the babies’ heartrate and said that he was fine.

The following day was a different story when we had another appointment at a different hospital to measure Zayed’s weight and size. They asked me some questions. They wanted to know if I needed to go pee or had diarrhea. I did not. I was confused and scared and asked if everything was alright. They brought in the radiologist to explain to us that the amniotic fluid was slowly leaking through my urine and sent us rushed to the hospital through Emergency. We were told that they would contact our OB/GYN and to expect an emergency cesarean delivery. I was scared, crying, and calling our family members for support.

Our beautiful Zayed was born that day September, 16th 2016 at 2:00 PM weighing only 3.12 pounds and 17.02 inches. I had a birth plan. I wanted to see him be born, hear him cry and hold him in my arms as soon as possible. This did not happen. I was completely sedated since the epidural was taking too long to kick in and I could feel if they’d start cutting into my skin. As soon as Zayed was born, doctors ran different tests trying to find and diagnose a syndrome they thought he had since his features seemed to be related to some genetic syndromes. I knew he didn’t have any of that. He was God’s fighter. However, he was diagnosed with a heart defect called Ventricular Septal Defect.
This made things more complicated. He was given a feeding tube to provide a special formula for premature babies, but I knew my breastmilk would be the best for him to keep him strong. He was under special care in a Neonatal Care Unit since doctors would not allow him to cry or get agitated to avoid putting his heart under stress. He received a diuretic to prevent liquid building up in his tiny lungs. The diuretic he was receiving was not allowing him to grow fast enough and he needed a more consistent and thicker feeding formula to boost his growth. I gave permission for Zayed to receive this formula along with my own pumped breastmilk and to be allowed skin-to-skin contact as well during our visits. Days went by and he had some good and some not-so-good days. His genetic testing for different syndromes were all negative (thank God).

One of my sisters suggested that I request donor human milk from the milk bank. I figured that I was likely to be approved since my first born had a history of allergies to soy and cow’s milk protein, and of course, Zayed’s early delivery and low birth weight was a major point. We submitted the prescription and paperwork and learned that Zayed qualified to receive donated breastmilk. I was still pumping my own breastmilk to provide to our son as much as possible, but the donor milk could be used supplementally.

At 15 days after birth, Zayed’s nurses realized he had an irregular heartbeat. They were not sure of the cause. After a serious talk with Zayed’s doctors, and our own researching, we (his parents) decided to transfer Zayed to Houston’s Texas Children’s Hospital. We had already visited TCH for future planning of Zayed’s surgeries and it is also one of the best hospitals in the country to treat heart issues.

We were stressed and scared. Our family, especially Zayed and Yazid’s (big brother) grandmothers, helped take care of Yazid allowing him to attend school and keep his daily routine while we were away from home. He was 5 years old, and we did not want him to feel the stress we were dealing with at the time. Zayed was transferred to TCH, and was stabilized as soon as we arrived. He had heart, blood, and genetic testing, as well as us (his parents).

Meanwhile, I had ongoing communication with the Plastic Surgery Department with a doctor’s assistant that I became friends with. Her name was Carmen, she was an angel sent from heaven to Earth for us. She was one of those people that help you expecting nothing in return, and was a loving, caring, and supporting person throughout that difficult time. We scheduled a surgery to place a plastic prosthesis on Zayed’s palate to help with his feeding and suction. However, it was cancelled since we would have to be returning to the hospital once a week for a check-up, and we lived 6 hours away. Nevertheless, it was not going to be a significant surgery since he was going to have his lip and palate surgery soon after that.

Zayed’s main need to be approved for surgery was to gain enough weight. He needed to be at 10 pounds and was still 5-6 pounds. It was really hard for him to gain weight between being fed through a feeding tube and receiving diuretic medication. Speech pathologists were in charge of helping Zayed learn how to transfer milk from a bottle to decrease the use of feeding tubes with time.
We had found a very respected plastic surgeon in Mexico City. I was in close contact with him about Zayed’s condition and improvements. He had been supporting and advising us even before Zayed was born. He was another angel sent from heaven.

There we were, at TCH, struggling to communicate with doctors despite our language limitations (mine and my husband’s first language is Spanish), and  trying to get Zayed’s breastmilk prescribed and authorized since doctors did not believe he would qualify to receive it after 2 KG of weight gain. We (my husband and I) believed they really just wanted us to give Zayed formula instead of breastmilk. They still mixed formula with breastmilk and this made Zayed uncomfortable and crying in pain while dealing with acid reflux, colic, and gas. This was very stressful on top of being away from home and our older son Yazid. We stayed at the hospital until October, 24th 2016. We were going home with a feeding tube running through his nose and other special medications for his heart defect and lungs.

Since we were barely getting any sleep at home, Dr. Rocco (one of Zayed’s doctors) suggested that we request a “full time” nurse (8 hours a day 5 days per week). Although we didn’t agree at first, we reconsidered and accepted the extra help. We just didn’t want to fail Zayed and miss anything we could do (ourselves) to help him. This nurse helped us for 3 months as much as she could until the day of his lip surgery. Zayed would not stay calm with her, she could never make him stop crying. He would only calm down with me and other times with my husband or my mom and sister.

Along the way, after a few months and 6 different formula trials his pediatrician recommended he be tested for any allergies; he tested positive for the cow’s milk protein, soy, and peas (just like his brother Yazid). Zayed’s condition could have gotten worse since he was premature and his digestive system was not mature enough and could cause projectile vomiting, constipation, swollen intestines.

Both Dr. Rocco and Dr Lucas-Sevier helped us with more paperwork to send to the Mothers’ Milk Bank in Austin, TX, and Zayed was finally approved for milk in December 2016. Zayed still needed a special mixture of donor milk to increase the calorie intake in his feedings to help his heart defect, but the milk bank was able to create this for him. We were very happy to receive these donations. I am aware 100% of the unlimited benefits breastmilk has over a baby’s development. I knew how much this was going to help Zayed get his immune system stronger against all his circumstances. I still continued to pump my breastmilk as much as I could but it was not a regular volume every day because of the lack of sleep and so much stress. I changed my eating habits, my drinking habits, and used breastfeeding aides (tea, pills, massages). All of this was done for almost a year to help our baby grow faster and healthier. 100% worth it!

In January 2017, Zayed had his first cleft lip surgery. His speech and physical therapy continued. Right before this surgery, doctors ran heart tests to ensure his heart was strong enough for surgery. We were surprised and thankful to learn his heart defect had healed by itself. God was right there with Zayed. He would not need heart surgery later in his life. Zayed is our miracle baby! No more feeding formula and no more diuretic medication. Exclusively breastmilk for Zayed from that point on. Thank you milk donors!"

What is Cleft Lip?

The lip forms between the fourth and seventh weeks of pregnancy. As a baby develops during pregnancy, body tissue and special cells from each side of the head grow toward the center of the face and join together to make the face. This joining of tissue forms the facial features, like the lips and mouth. A cleft lip happens if the tissue that makes up the lip does not join completely before birth. This results in an opening in the upper lip. The opening in the lip can be a small slit or it can be a large opening that goes through the lip into the nose. A cleft lip can be on one or both sides of the lip or in the middle of the lip, which occurs very rarely. Children with a cleft lip also can have a cleft palate. Learn more.

What is Cleft Palate?

The roof of the mouth (palate) is formed between the sixth and ninth weeks of pregnancy. A cleft palate happens if the tissue that makes up the roof of the mouth does not join together completely during pregnancy. For some babies, both the front and back parts of the palate are open. For other babies, only part of the palate is open. Learn more.

The Centers for Disease Control and Prevention estimates that, each year in the United States, about 2,650 babies are born with a cleft palate and 4,440 babies are born with a cleft lip, with or without a cleft palate. Most of the time, these orofacial clefts occur without any other major birth defects. The causes of orofacial clefts are unknown, but the majority are thought to be a combination of genetics and unknown environmental factors during pregnancy.

The most immediate concern for a baby with cleft palate is good nutrition. Sucking for children with a cleft palate is difficult because of the poorly formed roof of the mouth. Children with just a cleft lip (without a cleft palate) do not routinely have feeding difficulties, but children with both cleft palate and lip have the greatest difficulty getting proper nutrition and avoiding infections caused by the combined open spaces. Associated ear infections may lead to hearing loss.

Surgery is recommended as soon as possible, and often, multiple surgeries are required. Infants must reach a minimum of ten pounds to tolerate the surgery to repair cleft lip, and 12 to 18 months is typically needed before the palate can be repaired. Multiple surgeries may be needed depending on the severity of the clefts. Surgical repair can improve the look and appearance of a child’s face and might also improve breathing, hearing, and speech and language development. Children with orofacial clefts often require a variety of services that need to be provided in a coordinated manner throughout childhood and into adolescence and sometimes adulthood. With treatment, most children with orofacial clefts do well and lead a healthy life.

Breastfeeding is strongly encouraged for infants with clefts, but depending on the severity of the clefts, may not be achievable. Bottles with special nipples for infants affected by clefts are available, but failing to get adequate nutrition leads to a need for a feeding tube that delivers milk directly into the stomach. Donor human milk is prescribed when a mom is unable to provide her breastmilk. Infants affected by clefts are particularly vulnerable to upper respiratory and ear infections, and human milk is prioritized for them to help avoid these additional complications.

Thank you, milk donors who fed this sweet boy, and financial donors who covered the costs of screening the milk donors and processing the milk to make it safe for someone so vulnerable as Zayed. Together you form the tribe that saved his life, gave his family hope, and gave the world this beautiful person.