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My Imperfect Baby

My Imperfect Baby

This couldn’t be my long-awaited son. This was a deformed baby.

by

“It’s a boy!” the midwife announced brightly.

I smiled contently. It had been a long labor and I was thrilled that it was finally over. I couldn’t believe we were now the proud parents of a baby boy. After four delicious girls and living in a house where the ratio of dolls to people was 5:1, we were ready to start evening out the gender difference. Happily distracted imagining how I would tell my parents the good news after Shabbos ended, I barely noticed the midwives whispering between themselves as they diapered our newborn on the other side of the room. My euphoria was not to last for long.

“We need to show you some things about your baby,” the midwife said gently to me as she brought over my new bundle. I could barely register what she was saying. Show me what, exactly?

She pointed to the right side of his head. I gasped. In the area where his right ear should have been was nothing but smooth skin. Lower down closer to the beginning of his chin was a small peanut-like appendage, the beginnings of an ear that had never fully developed.

Before I could even begin to process what I was seeing, she turned my baby around and said, “Look here too.” I gasped even more loudly. Sitting on the back of his head was a small golf-ball sized lesion growing out of his scalp, almost like a large bubble. I couldn’t believe it! This couldn’t be my long-awaited son. This was a deformed baby!

“He also has a common urological deformity called hypospadias. His brit milah will likely have to be delayed until he has urological surgery.” Before I could ask any questions, the midwife continued, “The pediatrician is on her way. Your baby will probably need to be put in the NICU for some tests, but it is possible that everything you are seeing is just external, although we won’t know for sure until he is checked out.”

The shock on my husband’s face mirrored my own feelings. When would we wake up from this bad dream?

My head was spinning. Just external? This couldn’t be real, could it? I was certainly having a nightmare. I stole a glance at my husband in the corner of the room; he was absolutely white, the shock on his face mirroring my own feelings. When would I wake up and find out it had all been a bad dream?

The pediatrician came and examined our baby, while we looked on in horror. She informed us that indeed, our 5-minute-old son would need to be brought to the NICU promptly for observation and tests, mainly to determine the nature of the “bubble” on his head, which potentially could be connected to his brain. “But don’t worry,” she said. “It is possible that everything inside is okay and these issues are just external. There are surgeries that can fix these types of birth deformities.”

The pediatrician left with our baby, instructing my husband to follow her so we would know where the NICU was located. I was left alone with the midwife and my shattered dreams. I was too shocked to say anything, and too weak to try. The midwife tried to comfort me. “We see these things from time to time. I think your baby has an intelligent, aware look. Don’t worry; they will do surgery to fix his issues.”

“Have you ever seen these three birth defects together in one child?” I dared to ask.

“No,” she answered honestly.

Mazel Tov?

It was close to dawn by the time I was able to go visit my new son in the NICU. Feelings of pity welled up inside me as I watched my tiny helpless newborn hooked up to a monitor. He had no idea what lay in store for him. “I promise I will take the best care of you that I can,” I whispered to him, as the tears streamed down my face.

We couldn’t understand why she was wishing us congratulations. What reason did we have to rejoice?

“Mazel tov!” the nurse on duty said to me and my husband when she noticed us watching our baby. My husband and I looked at each other quizzically. We couldn’t understand why she was wishing us congratulations. Didn’t she see how miserable we were? What reason did we have to rejoice?

While my baby was in the NICU, I was placed in the regular maternity ward, some floors down from him. My physical distance made bonding with this strange looking child even more difficult, especially because I was surrounded by all the normal looking babies in the maternity ward. These mothers don’t even realize what a blessing it is that their babies look normal, I thought to myself.

My husband and I had noticed and pointed out to the doctors in the NICU that my baby’s face wasn’t perfectly symmetrical. The bones on the side of the face with the missing ear were slightly smaller than the other side, making my baby’s mouth open in a somewhat lopsided fashion. My whole definition of beauty had changed: A beautiful baby was simply a whole one, with a symmetrical face, no matter how ugly he might be. And all those babies around me in the maternity ward fit that bill.

I recall one instance when I was eating lunch in the cafeteria. Each mother had her newborn next to her in a bassinet and in walked one mother with not one but two beautiful babies in her bassinet. They were clearly twins, one boy and one girl. I watched on in wonder as they lay sleeping peacefully side-by-side. I’ve always harbored a secret dream to have my own set of twins. Now, for the first time in my life, I felt real jealousy. Why is she lucky enough to have two beautiful babies while I have one deformed one?

Shame on you! The logical part of my brain screamed. You have four perfectly healthy girls at home! This mother’s twins have nothing to do with your baby! Let her enjoy them! I nodded in acceptance, even as the tears started to spill. Not wanting to cast an evil eye on the precious twins or their mother, I blessed them silently. “Hashem, may those beautiful babies grow to be strong and healthy, and may their mother have the strength to raise them.” I then fled the cafeteria so as not to torture myself further.

Born Different

When I got upstairs to the NICU, I took a good look around at all the other babies surrounding my own for the first time. The funny thing was, compared to them, my baby actually looked good! While he was born at a normal weight of 7 pounds, all the babies around him were premies, no bigger than my hand. They all looked so delicate, so tiny, as if they were fighting for dear life. Most of them were fed by a tube, a few of them carefully bit by bit by bottle, but my newborn was the only one who was able to nurse normally around the clock. Sitting there for hours at a time, watching all the ominous life-preserving machinery beeping with the little preemies attached, I began to realize that perhaps my husband and I did have what to be thankful for.

Over the next few days in the NICU, my baby met more specialists than most people see in a lifetime: Pediatric urologist, ophthalmologist, audiologist, neurosurgeon, neurologist, geneticist, radiologist, and many neonatologists. He was subjected to a whole battery of tests to determine if he was healthy on the inside, or if the birth defects indicated that internal organs were also affected in utero. I breathed a sigh of relief as one by one, each of the tests came back clear. It was a funny place to be in; my baby wasn’t “sick,” but he also wasn’t “normal.” If so, where did he fit in, exactly?

I never fully despaired because I was banking on the NICU doctor’s optimistic opinion that surgeries would “fix” my son, and this dark period of his birth would be relegated to past memories. He would be like every other child on the street, and no one would ever need to know that he was born “different.”

And then I met with the ENT. He explained that the location of the small appendage-like ear hinted to the fact that development in the area was hindered in utero, and more likely than not, there was no inner ear at all. “We won’t know for sure until an MRI is done, but what we can hope for is a working auditory nerve. Then, even if he has no inner ear, at least he can wear a special bone conduction hearing aid that will bring hearing directly to the nerve, and he’ll have hearing on both sides.”

After the consultation, all my pent up emotions finally broke through. “Now you’re crying?” the NICU doctor on duty asked me quizzically. I knew I seemed superficial for being upset about something as small as a hearing aid when the other tests had come back clear. But it was really much more than that. Now I would have a tangible reminder that my son would always be a little different than his peers, and I needed time to accept that and grieve. Furthermore, I had naively assumed my son’s outer ear would be fixed right away. Now the ENT revealed that it would be many years before it would be repaired, and he would meanwhile remain with the funny peanut-like ear. How would my son manage the teasing from his peers that would surely take place?

Acceptance

The hospital social worker met with us and explained the important task ahead of us: to raise our child with confidence. She explained that our son could succeed and live a totally normal life as long as he was confident. And in order to do that, we needed to accept him for who he is. Furthermore, she explained, we needed to prepare my other children for their new brother’s homecoming. “Children are very accepting. If they see that you are calm and accepting about his differences, they won’t mind it either. But if they see you worrying and whispering about him, they will think there is what to worry about.” Her advice was invaluable, and indeed, when my children later met their new brother, they innocently asked, “Did we also use to have an ear like that?”

My kids were one thing, but I wasn’t sure how to relate to my neighbors and friends. At that point, we hadn’t even told anyone other than our parents that I had given birth, and the baby was almost a week old. The shock was finally beginning to wear off, and we needed to decide what to tell people. “If his birth defects are visible, don’t try to hide them, as it will just cause awkwardness,” my Rebbetzin advised me. “Be open with your friends. If they see that you are normal about the situation, they will be too.” Indeed, once I shared the news, my friends were very supportive.

My son might not be perfect, but the birth of a child is a gift no matter what.

I left the hospital with mixed feelings. I was glad to finally be leaving the NICU, going home, back to normal life. But I knew that there was a long road ahead of us. Our discharge letter had instructions to follow up with many specialists, to map out a plan for my son’s care and future surgeries. I had to be especially careful about the lesion on my newborn’s head, lest it leak or pop, and I worried how I would manage this special care while taking care of my other children.

As I walked through my front door, my eyes focused the colorful “Mazel Tov!” signs that my neighbors had plastered on my door. As soon as I passed the threshold I noticed a beautiful blue balloon, which read “It’s a boy!” that someone had dropped off. The contrast between the ominous atmosphere in the NICU and the congratulatory one in my home was striking, and I felt I was standing at a bridge between two worlds. The signs and balloon were such simple gestures, but along with them came a startling realization. Yes, this is a happy occasion, I thought to myself. This is an occasion that warrants hanging up balloons and mazel tov signs, I realized. My son might not be perfect, but the birth of a child is a gift no matter what.

“Welcome home,” I whispered to my newborn. “Let’s go meet your sisters…”

 

June 18, 2016

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Visitor Comments: 27

(21) Ch. karniol, December 12, 2016 8:43 PM

how is the baby sholem refoel ben rachel sarah bluma?

(20) Yocheved H, June 26, 2016 4:59 PM

Mazel Tov

Dear Sarah, Mazel Tov on the birth of Sholom Refoel, may you and your family know great prid and joy as you watch him grow in good health, develop all of his G-d given talents, and transcend whatever challenges he may face. Sholom's soul is perfect. I have three children on the Autism spectrum. As parents we have learned to recognize and celebrate milestones others may never even notice. We have cultivated my sons musical talent, and joyfully watched him lead our congregation just last week in celebration of the 10th anniversary of his bar mitzvah. At 13 he couldn't write a one sentence d'var Torah, this time without being asked, he presented to me a one page singlespaced hand written talk. Have faith that there is much joy ahead of you and be open to it. Cultivate all Sholom's talent and watch him amaze you. Every child brings different challenges and different joys. B'hatzlacha to you, your husband, your daughters, and all of your medical teams. May G-d be with all of you. Sholom is in my prayers for a refuah shleimah!

(19) Ralph Loewenthal, June 26, 2016 7:25 AM

A blessing in disguise

Mazal Tov! I have always believed that Hashem blesses us with children. He gives the special children / neshomas to those special parents who will be able to give those neshomas the correct care and upbringing so that they can complete their tikun in this world. So as you can see you must be very special parents to be blessed with such a wonderful neshoma.

(18) jana Ondrackova, June 24, 2016 8:34 AM

admiration and goodwil lmessage

I admire your patience and bravery and I wish you, your daughters and your son all the best. having healthy children and grandchildren I cannot even imagine myself in such a situation. May God help you.

(17) Anonymous, June 24, 2016 6:30 AM

Mazel tov on the birth of your son. Thanks so much for your honest portrayal of those moments after birth when you realize your precious package came in unexpected wrapping... I went through similar moments after one of my children's births and it was a difficult time....it took me almost a year to come to terms with certain things... Thanks for the openness and self-awareness which will surely help other mothers. May Hashem bless you and your family.

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