In our March edition of our Preemie Family newsletter we learned about the incredible Henry Joseph Anicker, a preemie born at 25-weeks, 2 days who was 1 lbs. 3.65 oz. at birth and spent 109 days in the NICU.
Read more in an update by his mother, Kate. . .
by Kate, Henry’s Mother:
Henry’s birth was a surprise at 25 weeks 2 days. I had never felt him move inside me. I did not realize that babies could survive before reaching the third trimester. He weighed a mere 1 lb. 3.65 ozs at birth and spent 109 days in the NICU. According to the NICHD Neonatal Calculator on Extremely Preterm Birth Outcomes, he had a 14 percent chance of “survival without moderate to severe neurodevelopmental impairment.” Henry ended up being one of the lucky 14 percent. He turns 6 years old at the end of April. He is happy, loquacious, intelligent, creative, and affectionate. He started kindergarten in the fall and is doing very well in an accelerated kindergarten program. His success is a result of the love he received from our family, the care that he received in the NICU, the therapy that he received from our state’s early intervention program, his own fortitude, and luck.
The Early Birth
Had my doctor and his staff been competent, my blood pressure issues would have been caught much earlier and I could have been put on bed rest and/or given magnesium in time to give my son a couple more weeks in the womb. Unfortunately, I had a doctor whose assistant did not know what she was doing, and I believed her when she said at every appointment that my blood pressure was 120/80. A week before Henry’s unexpected birth, I had to beg to get an appointment with the doctor even though my vision was failing and swelling had set in. At that appointment when I explained my concerns, the doctor told me that as a first-time pregnant woman, I just didn’t understand how it felt to be pregnant. The morning of Henry’s birth, my husband and I realized that the doctor’s assistant wasn’t even watching the blood pressure gauge as she “took” my blood pressure. The doctor walked in and said, “There is no problem. Your blood pressure is fine.” My husband told him that the assistant wasn’t taking the blood pressure correctly. At that point, the doctor opened up my file and looked at the urine results. He took my blood pressure himself and then calmly recommended that we get over to hospital triage unit across the street. By that point, my kidneys had begun spilling protein. I spent several hours in triage and was then flown via helicopter to a hospital with a Level III nursery. My blood pressure hit 190/150. The hope was that I’d be able to spend bed rest time in the hospital, but it was too late. I had only been at the hospital a short while when it became clear that Henry was in distress. His heart rate had dipped a couple times. I ended up having an emergency c-section.
The NICU Stay
Henry’s NICU stay was filled with many ups and downs. Like many preemies, he was put under bili lights and needed blood transfusions. He needed steroids for his lungs. He had edema and kidney problems for a while and was put on diuretics for two months. When he was two and a half weeks old, he mysteriously turned gray in the belly. The doctors could not explain his color nor his miraculous recovery a day later. He had several rounds of feeding intolerances and was at one point diagnosed with necrotizing enterocolitis (NEC) that resolved without surgery. He was diagnosed with chronic lung disease/ bronchopulmonary dysplasia (CLD/BPD) and appeared to have metabolic bone issues. A small bleed in his cerebellum was detected, which was worrisome because the few studies on such bleeds suggested poor outcomes. Toward the end of his NICU stay, he had several bradys, dippings of the heart rate, after his feeds. He had moderate reflux. Six days before he left the hospital, he had a laser procedure done on his eyes to prevent retinal detachment from ROP (Stage 3). Three days before he was discharged, he had bilateral hernia repair surgery. He came home on oxygen five days after his due date weighing 4 lbs 13 ozs, which is light for a baby around due date.
While in the NICU, I spent almost every day with Henry, and both my husband and I spent time with him at night. My parents visited him every day, splitting up their time so that Henry was rarely without a family member nearby during the day. I held Henry for the first time on Mother’s Day, two weeks after his birth. A couple weeks later, we were doing kangaroo care with him regularly. I did it during the day, and my husband did it at night. At times, it felt as though there was very little that we could do to help him, but kangaroo care is something that parents can do once babies are stable. A parent’s chest is the next best place for a neonate after the womb. When neonates are closer to due date and their skin is not quite so sensitive, infant massage is something that parents can do as well and has been shown to benefit babies.
When Henry came home, we dealt with many issues. He had insomnia, by which I mean he only slept 1-3 hours per day, never for more than 20 minutes at a time. We soon realized that it was caused by Reglan, a medication given for digestive motility. He was also diagnosed with cow’s milk and soy allergies, something that had been overlooked in the NICU. He also required Synagis shots during his first RSV season. Owing to problems feeding Henry, we called our state’s early intervention program when he was a couple weeks old. They had apparently lost Henry’s application submitted by the NICU a couple months earlier. We therefore had to wait a couple weeks for an appointment. The evaluator did her evaluation when Henry was 2 months adjusted. By “adjusted,” I mean his age from due date. A preemie’s developmental age is best measured by due date, not when the baby happened to come out of the womb. Consequently, we treated Henry by his adjusted or due date age. His early intervention evaluation results looked dismal. The results, however, did hasten getting him therapy with an occupational therapist (OT) who specialized in feeding behaviors. She did her assessment when he was 2.5 months adjusted. She diagnosed him with torticollis, a tightening of the neck muscles, which resulted in restricted head and arm movement. The therapist showed us exercises that we could do to help him. She was able to identify one of his feeding issues right away and give us tips on bottle positioning, which helped with feeds immensely. Henry saw an occupational therapist twice a month during the first year and a physical therapist (PT) every week or two as well. The second year we scaled back the frequency of the therapies, but he still received them and was monitored.
Once we sorted out his dairy and soy sensitivities resulting in me eliminating those products from my diet, fortifying my milk with Neocate, an elemental formula, and figuring out how to provide cheek and jaw support during feeds, Henry began to gain weight. Previously under the bands of normality for his adjusted age, by 6 months adjusted he was around the 20-25th percentile on weight, which is pretty much where he has stayed ever since. He was short for his adjusted age but was on the tall side of normal by 9 months adjusted.
One of the highlights of Henry’s first year was no longer needing oxygen assistance at 4 months adjusted. Working with oxygen was necessary and doable, but it made the little things more difficult. If you were in the living room with Henry and needed to get more milk, you had to not only carry Henry to the kitchen but the oxygen tank as well. It was nice to finally be able to change his diaper without having to thread his oxygen tube down his shirt. It was fantastic to see his face without tubing around it.
Given his lung issues, we kept him home the first two years and avoided public areas, especially during RSV season. Avoiding public areas does not mean that one has to be locked inside one’s home. We went for walks with Henry every day, sometimes twice, even when he was on oxygen. Outdoor air is cleaner than indoor air in most cases. Fresh air and sunshine are good for babies and parents. Some parents find the act of avoiding public areas and events, such as the mall, family reunions, holiday parties, or the grocery store, quite challenging. We didn’t. It would of course have been fun to show our son off to friends at parties, but his health was our priority. Looking back, that period of our lives was challenging but also special because of our intense focus on our family.
Micropreemie development tends to follow a slightly different trajectory from that of full-term babies. The growth curves for micropreemies tend to be a little bit flatter than what other kids experience. The medical issues of preemies sometimes delay the development that would otherwise have taken place. In terms of gross and fine motor skills, Henry was behind on different developmental evaluations until 8.5 months adjusted or so. At that point, the neonatologist at the NICU follow-up clinic felt that he had “caught up” to his adjusted age, which was unexpected given his rough start. It is fairly typical for micropreemies to be delayed off their adjusted age for a couple years. Looking like one’s adjusted age is a best case scenario for many micropreemies given that there are risks and complications from not spending 40 weeks in the womb.
Even though Henry caught up to his adjusted age in terms of development, we continued with physical therapy and also occasionally checked in with the OT. The PTs who worked with Henry were wonderful. His first PT taught us how to challenge him appropriately. Preemies are fragile in many ways, but in order to develop to their full potential, they need to be challenged. It can be hard balancing certain aspects of medical fragility while trying to challenge the child in physical ways so that the child can “catch up” to where he should have been had he been born at his due date. His PT helped us create appropriate expectations and challenges for him. His second PT helped us sidestep a lot of issues by catching things early so that he was able to remain on track. Just because a preemie “catches up” or “is doing well” at a single point in time does not mean that the shackles of prematurity have been lifted forever. The research is clear that preemies are at-risk for a host of things and that some issues do not appear until the preemies are older. Consequently, having someone who can help the parents catch and address issues early helps the child stay on a positive developmental trajectory.
Henry sat up unassisted at 6.5 months adjusted, pulled to a stand and crawled at 8 months adjusted, and walked without assistance at 13 months adjusted. At 12 months adjusted, his speech wasn’t particularly impressive. He said dada but wasn’t consistent in using it to refer to my husband Jeff. After Henry learned to walk, his speech took off at an amazing rate. By 15 months adjusted, he could say about 65 words and use them appropriately. Speech ended up being one of Henry’s strengths. He also had a remarkable ability to comprehend stories. By 18 months adjusted, we read fairly lengthy children’s books, and Henry would fill-in-the-blanks if I left off the end of sentences in his favorite stories.
A little over a month before his second birthday, we had an evaluation done by one of our favorite OTs, the one who had initially evaluated him at 2.5 months adjusted. She was impressed with Henry’s speech and ability to pay attention to various tasks. Visual-motor integration was one area tested. He was at the 35th percentile for his birth certificate age and the 75th percentile for his adjusted age. The OT recommended that at 2 years old, we start thinking about him by his birth certificate age.
We never bought into the idea that preemies “catch up” to their birth certificate age, even though it is something therapists and doctors like to claim. As we see it, development starts at conception. Children’s bodies don’t get to skip developmental stages just because they were born early. The preemie’s body never “speeds up” to look like the age on the birth certificate. But as kids get older, there is so much natural variation in a population that a 3.5 month age difference between adjusted age and birth certificate age matters less and less. At age 2, we had no problems making the switch, referring to Henry by his birthday age.
Siblings for Henry
Before Henry’s second birthday, our daughter Robin joined our family at 18 months of age. She was very shy, tentative, and quiet. Henry was not. He was very talkative, bold, and loud. It is hard to overstate how Henry and Robin have helped each other grow and develop. Robin came out of her shell. And Henry learned how to share and play with others, something he never had to do before as we kept him at home the first two years because of the challenges that micropreemies have with their lungs. Despite their different personalities, Henry and Robin were like peas on a pod. Having siblings close in age has been wonderful for both of them. We officially adopted Robin the following year.
A couple months before Henry turned 3, he was evaluated by the public school system as kids are when they have been in the state’s early intervention program. It was determined that he no longer needed services. Instead of physical therapy, we enrolled Henry and Robin in dance and then later gymnastics. Both were good for developing body control, balance, coordination, and strength. We also enrolled the kids in swim lessons, which was initially hard for Henry owing to his lack of body fat. But he’s gotten the hang of it.
Shortly before Henry turned 3, we took in a little girl named Ada who was 2 days old. Henry and Robin handled the new addition to our family with grace. There’s no question that having three kids is harder than having only two. Once the kids realize there are more children than adults, all sorts of mischief happens. We have been impressed with how generous and loving our kids are to each other. We officially adopted Ada this past December.
Our children have different personalities and strengths. Henry is creative, cerebral, confident, independent, and, dare I say, argumentative. He is rather Clintonesque in his parsing of language to get a result that he wants. Robin is sweet, quiet, helpful, and athletically gifted. She has excellent body control for her age. She’s also very artistic with exceptional fine motor skills. Ada is the consummate extrovert, the life of the party. She’s the upbeat kid around whom a room revolves. She figures that if Henry and Robin can do something, she can do it too. As a result of watching Robin, Ada started doing cartwheels at 2.5 years. They learn a lot from each others. They of course argue like all siblings do. But they also motivate each other to try new things and genuinely enjoy each other’s company.
Residual Effects of Prematurity
For the most part, we have worried less and less about Henry’s rough start as he has gotten older. It would be foolish, however, to think that Henry is no longer at-risk or that he is the same child that he would have been had he been born in August instead of April. Unfortunately, it isn’t unusual for “issues” to appear when preemies are in elementary school , especially around age 8 when learning moves from concrete forms of reasoning to abstract ones. That said, we have many reasons to be optimistic about Henry’s future. Henry’s kindergarten has an accelerated curriculum that has given him no trouble. He is adding and subtracting double digits and able to fill in missing values into equations (e.g., 3 + ___ = 10). He already knows most of the 100 sight words plus color and number words that are expected by kindergarteners by the end of the year. Most importantly, he does well on logic questions and reading comprehension. Nevertheless, given his history, we have to be mindful that issues could arise. And if they do, we will get him help right away.
Henry has worn glasses since he was 2.5 years old. This is a result of his prematurity. In true Henry fashion, his favorite glasses are as bold as his personality…noticeable blue Sponge Bob frames.
We have been concerned at times over Henry’s fine motor skills. As a baby and toddler, Henry had some mild hand sensory issues. He was an exceedingly clean eater and rarely engaged in art projects at school because he did not like getting his hands dirty. In preschool last year, he rarely came home with art work. We had him and Robin enrolled in an art program last year to encourage their fine motor development. Henry held the record for having the fewest number of pieces showcased on the class’ Facebook page. He’d draw a single line on page and consider it good enough. Then, last March, Henry was introduced to the Angry Birds game. They became a bit of an obsession — an obsession that resulted in him wanting to draw. He spent the summer drawing pictures of Angry Birds and Pigs. In August, he spent a couple days making a six volume cartoon book series on Angry Birds. His freehand drawings are now quite detailed.
We could not be more proud of Henry’s accomplishments. When he was born nearly six years ago, we were hopeful but not particularly optimistic about his future. The attending neonatologist on the night of his birth was fairly blunt, and appropriately so, telling us about the challenges that most micropreemies face. I did quite a bit of research on preemie development and child development after Henry was born. I strongly believe that one should look at data when making decisions for one’s child. I also know that there are a lot of things that haven’t been well-researched when it comes to preemie development and that variables, such as parental involvement, are often missing from statistical models predicting preemie outcomes. I don’t think that parental involvement can necessarily overcome all obstacles put forth in a child’s path by an early birth, but it can minimize the constraints that prematurity often brings and help children maximize the gifts they possess.
Today, Henry is a fun-loving, active, creative child. He plans to be a builder. Our home is filled with creations built to house Henry’s Angry Birds and Pigs. He very much enjoys spending time on the iPad and computer. We suspect that his reading is in part a function of his desire to find new apps on the iPad or his search for Mario and Angry Bird videos on YouTube. He also likes bouncing on our trampoline. It is one of his favorite activities. He loves playing imaginative games with friends at school and with his sisters. He enjoys tales involving heroes and villains and daring rescues.
The other night, Henry overheard me explaining to someone how he was born very early. He was an April baby who should have been born in August. Henry said, “Mom, I didn’t want to be born in August.” That’s one wish that I wish hadn’t been granted to Henry. Prematurity is never an ideal situation, but Henry has done exceptionally well despite the tough road he had to travel to get where he is today.
Henry Running taken by Jake Gillespie
Henry at Gymnastics taken by Kate Kenski
Henry at the Aquarium taken by Kate Kenski
Henry Draws the Lorax taken by Kate Kenski
Henry Dancing taken by Kate Kenski
Henry Having Fun taken by Jake Gillespie
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