This past weekend I was planning to sit down to write the next edition of my triathlon training tales to share with you. Admittedly I have been procrastinating writing it because I’ve been having a pity party for myself due to a hamstring injury that has sidelined me from running. But after Sunday’s workout and having a random chance to meet up with someone who has forever changed my world, it became clear to me that I need to share something more meaningful and how my training for endurance events has provided me strength to persevere through life’s most challenging moments.
As many of you know, I have fraternal twin boys who will be celebrating their third birthday this month. Their birthday stirs up a lot of emotions for me because of the struggles my husband and I faced trying to conceive (one IUI, two IVF cycles and five frozen egg transfers), and the challenges we faced after a birth defect was discovered on baby B during a routine ultrasound. (Multiple babies are referenced as baby “A”, and baby “B” when in utero.) To say our conception, my pregnancy, and the life of our infants was a blind emotional roller coaster ride would be a giant understatement.
During my 16th week of pregnancy it was discovered that baby B, (H) had a small sac growing outside of his belly. This sac was an omphalocele. A word I have never heard before, and one that we quickly learned the meaning of, and consequences it may have on a life we were trying to create. (Please do yourself a favor – never, ever google a medical term while sitting in the doctor’s office!) An omphalocele develops as a baby grows inside the mother’s womb. Part of the small intestine and/or other abdominal organs, covered by a thin transparent membrane, protrudes outside the abdomen at the umbilical cord because the abdominal wall muscles don’t close properly. (How ironic that my son was born with diastasis recti). To add to our worry, 25-40% of infants with an omphalocele have other birth defects, such as heart defects, or chromosomal abnormalities.
After many weeks of tests, waiting, more tests, more waiting, we learned baby B did not have any other related physical or genetic conditions that would create additional challenges for him. And after two separate surgical consults (a surgeon at Evanston Hospital, and a surgeon at Lurie Children’s) we were hopeful he could have his birth defect completely repaired after he was born. But we would not know how complicated his omphalocele was until he was born and fully assessed.
For 22 LONG weeks we had an intense ride filled with fear of the unknown and excitement that we were having two babies. Unlike most moms-to-be, I was NOT anxious for the boys to be born. I kept faith that I could carry them full-term because premature babies would further complicate baby B’s issues. To our knowledge baby A was thriving and healthy. I exercised through most of my pregnancy because exercise keeps me sane, and my high-risk team of doctors at North Shore’s Evanston Hospital supported my desire to workout, and encouraged me to deliver vaginally.
I was very fortunate to hold onto my babies so they could thrive for 38 weeks in my body. My robust babies entered the world (after a very long induction/labor which ended in a c-section) on August 18 weighing 6lbs 6oz, and 6lbs 1oz. Baby B was whisked away after I saw him for a brief 10 seconds. Baby A (W) came to my chest after surgery was completed. W was absolutely perfect. I spent nearly two hours with W and it wasn’t until that evening, nearly four hours later, that I was able to meet H when my husband wheeled me down to the NICU. In my eyes, we was perfect too, but to meet your newborn hooked up to machines, and a giant wrap of gauze around his belly was absolutely heartbreaking.
We decided to proceed with a non-surgical approach to mend H’s belly after the surgeon’s assessment at Evanston Hospital. She was confident that the sac on top of his belly – the size of a softball – would be able to migrate back into his belly with a “paint and wait” procedure. (We did extensive research on this procedure before they were born and decided that was the route we wanted to try.) We were thrilled to see H capable of digesting a few milliliters of breast milk at two days old! This was a major milestone! Aside from his physical issues, H was a sweet and very brave little baby.
It broke our hearts in half to have to check out of the hospital six days later with just one child. I remember us driving down Lake Shore Drive in a daze. It was a beautiful summer day, and I felt so alone and cold. I didn’t know how we were going to care for a newborn at home and spend time with a newborn in the hospital. I didn’t know what to do with W when we got home, like most new parents my husband and I just looked at each other thinking ‘now what?’.
Luckily my mom was scheduled to arrive from NY the next day to help out. She was our saving grace. She would assist with W’s care while I went to visit with H in Evanston. H was doing okay. He had good days and not-so-good days. I remember every drive to Evanston; I cried on the way up, while I was there, and the long way back home. I just wanted my baby to be relieved of his discomfort and come home with us. But we didn’t know when he was coming home, and we started to second guess our decision about surgery, and if Evanston Hospital really was the best place he could be.
12 DAYS OLD
At 12 days old we went in for W’s routine follow-up at the pediatrician’s office. Our pediatrician was concerned W looked a little jaundice (he had some jaundice at birth but it wasn’t worrisome) so he sent us to Children’s Hospital to have a complete blood workup. (In 2011, Children’s Hospital was still in Lincoln Park, less than a mile from our home). As soon as we arrived home from Children’s the pediatrician called with test results and urgently requested we take W to Evanston hospital because he was in need of a blood transfusion. What?! This is my healthy baby. What do you mean my healthy baby needs a blood transfusion. Why? By the time my mom and I arrived at the hospital W’s body was limp. He skin was yellow. The doctors assured me he would be fine, he needed fresh blood. So W, my husband, and I checked into the pediatric ward at Evanston Hospital while my other son had residence in the NICU. It felt as if our world was crumbling all around us.
W laid in my arms the entire night while he received new blood to breathe life back into his body. The next day he bounced back to his normal self and his hemoglobin levels returned – not to normal – but to where they were when he was born, which was borderline anemic. We were discharged. The doctors had no hard and fast answers as to why a 12-day old baby’s red blood cells were being destroyed quicker than they could be replaced; they only had educated guesses, a possible G6PD deficiency (more on that later). We were given instructions to watch for signs of another hemolytic episode: lack of appetite, low energy, jaundice, and/or dark color urine. We arrived home in a complete fog. Late that evening we received a phone call from the NICU and H was now showing signs of hemolysis – the destruction of red blood cells. They were preparing to administer a blood transfusion to H but before they gave him new blood, they took a sample and sent it off to the Mayo Clinic to be analyzed. Same as W, H stabilized after his blood transfusion and his hemoglobin levels returned to where they were when he as born, still below average.
14 DAYS OLD
W is doing well and at home, but we have growing concern for H because he isn’t making as much progress as we hoped regarding his omphalocele. At 9pm on September 1st, the neonatologist called to tell us H was having complications and concerned his intestines have malrotated – this was/is our worst fear, and very serious. We consulted with our pediatrician, forever our champion, and he had H emergency transferred to Children’s Hospital to be under the care of Dr. Marleta Reynolds, (the first surgeon we had initially consulted when we were pregnant). I rode in the ambulance with H to Children’s, scared for his life. How could this brave little creature be struggling so much. Heartbreaking. It was 1am. A team of specialist were at H’s bedside doing a full assessment as soon as he arrived. H had stabilized and an emergency surgery was not necessary. Dr. Reynolds talked to us in the morning and based on her assessment and further test results, H would be scheduled for surgery on September 7 to correct his omphalocele. More waiting. Endless tears.
20 DAYS OLD – SURGERY
My mom extended her stay until after H’s surgery. My husband and I spend the morning with H before he was wheeled into the operating room. We had complete confidence in Dr Reynolds, Surgeon-in-Chief, and her team of experts. Intestinal issues are her speciality and she has done this surgery many times before. H was in THE best possible hands. Surgery was a grueling four hour wait. When Dr. Reynolds came out of the operating room, she told us his small omphalocele was an uncomplicated surgery. It was only his small intestines that were in the sac. She carefully unraveled his intestines and pushed them back through his belly button opening (about the size of a quarter), and “tied up his belly button up like a purse string” – her exact words. Not one stitch. We had an enormous sigh of relief but the first 48 hours of recovery were crucial. More waiting.
Rob and I spent some time with H after he came out of the recovery room, and decided we should try to get some sleep at home. When we arrived home at 9pm, my mom reported that W had no appetite to eat, and upon seeing him, his skin was a tint of yellow. We packed up W and headed back to Children’s and checked into the ER fearing W needed another blood transfusion.
POST SURGERY AND REUNITED
Both W and H are now sharing the same NICU room at Children’s Hospital. W received a blood transfusion overnight and H is doing great post surgery. While not ideal circumstances, it is wonderful to have them together, and for the first time, reunited since in being in the womb. We enjoyed holding them and spending time together as a family. The four of us were in the same room – albeit tethered to their NICU beds by wires.
The hematologists at Children’s were also perplexed why both boy’s bodies were breaking down their red blood cells faster than their bodies can create new ones. We learned at three months of age every baby goes through a low level of hemolysis as their body converts its blood supply from infant blood to adult blood. The majority of babies have no problem with this conversion and it tends to go undetected to unknowing parents. However, our boys were born with a lower hemoglobin level (not unusual for multiplies) so their hemolysis became critical and required a blood transfusion. But the perplexing issue is that they are not three months old, they are only days old.
The hematologist at Children’s suggested they both may have a G6PD deficiency. Glucose-6-phosphate dehydrogenase (G-6-PD) deficiency is a hereditary condition in which red blood cells break down when the body is exposed to certain drugs, foods, or the stress of infection. A deficiency occurs when a person is missing or doesn’t have enough of the G6PD enzyme, which helps red blood cells work properly. Too little G6PD leads to the destruction of red blood cells, called hemolysis. When this process is actively occurring, it is called a hemolytic episode. The episodes are usually brief, because the body continues to produce new red blood cells, which have normal activity. At just 21 days old each boy has had TWO hemolytic episodes.
The female is the recessive gene carrier for G6PD, but there is no family history on my side, and more so, it’s very uncommon for a female with a mixed ethnicity like mine to be a carrier. The only thing we can do is monitor their hemoglobin levels and wait for more conclusive test results from the Mayo Clinic. In the mean time if they have another hemolytic episode we “give them blood” as the Fellow hematologist so confidently stated.
W came home after spending three days in NICU. I am forever grateful to friends who came to our house to care for W while I could spend time with H. (My mom needed to return home after staying for three weeks.) H continued to make daily progress with his recovery. One week post surgery they began to introduce breast milk, one milliliter at a time, one day at a time. To be discharged, H had to be able to eat as much as he wanted (4-6 milliliters) without complications, and have regular bowel movements. We rejoiced over poop. Poop was now a beautiful thing!
While spending hours upon hours at the NICU, I realized how very fortunate our family was. We had full-term, relatively healthy babies, one who had a small appendage hanging outside of his body. We were not the parents of the seven day-old baby who was being prepped for open heart surgery, or the parents of the six month-old boy who had dozens of electrodes attached to his head to monitor brain seizures, or the parents of the boy who was born at 26 weeks who was still in NICU four months later with dozens of wires attached to his body. His parents could only visit in the evenings after they both worked a full day, and they traveled in from the suburbs. I am fortunate. I had to remind myself over and over. I am fortunate.
HOME AT LAST
On September 23 – after 36 days in NICU, one surgery, two separate trips to the ER with W, 5 blood transfusions between two boys, and more tears than I have EVER cried in my lifetime – our family was finally home together under one roof. It was a day filled with complete excitement, worry, and a little fear. Oh my goodness, I now had to take care of two infants! How?!
People always ask how I managed to hold myself together through this horrific time. I did what I had to do, and had the support from loved ones near and far. I had to be strong for my family and it was hard – really, really hard. Reflecting back three years later and having more perspective, I will say that it’s my will to preserver, and determination to get through challenges that hold me steady (my dear friend refers to me as ‘her rock’). Training and competing in endurance events, (two-time Ironman finisher, seven Half-Ironmans, three marathon and numerous other events) has taught me how to be physically, and more importantly, mentally strong. All those years of training paid off when our children were born and faced the biggest challenge of my life.
TRAINING FOR LIFE
Fast forward back to my pity party on Sunday morning. My alarm rang at 5:15am so I could go out for an early training ride. My goal was to ride for 90 minutes, or roughly 25 miles. I was feeling sorry for myself because what I really wanted to do was go for a run, but my hamstring is not allowing me to do that right now. I snapped on my helmet and rolled down the street to the lake front. As I entered the path I spontaneous decided my plan was to to ride all the way south and return north.
Nearing Ohio Street beach I held my line behind another biker to ride through the gnarly Navy Pier area under construction. No need to try to pass around here, too dangerous. In very uncharacteristic fashion I made an impulse decision to pull over at Monroe Harbor to take a stunning photo of the sunrise. (I rarely stop mid-ride to take a photograph, usually I take photos at the beginning or end of my workout before I leave the lakefront.)
A CHANCE ENCOUNTER
As I came upon Soldier Field there were volunteers setting up water tables on the side of the path for a race. “Oh great”, I said to myself, “now I’m going to get caught up in race traffic. Ugh, why can’t I be running instead of biking”. I slowed down to ask when the race starts – 8am. Sweet, I’ll be home by then. As I motor along I caught up to the same biker that I was behind around Navy Pier. Again, in very uncharacteristic move, I pulled up to the left side of the rider (rather than jet by) to share with him/her what time the race was starting in case they wanted to avoid the congestion. I glanced over and almost lost my breath. In an instant my skin tightened up as I felt goosebumps forming. I took a long pause and asked in disbelief,
“Are you Dr. Marleta Reynolds?”
“Why yes, I am. I’m sorry but I don’t recognize you.”
“Of course not…I’m…I’m HH’s mother. You were his surgeon three years ago. He was born with an omphalocele…He’s perfect now, he is absolutely perfect. He’ll be three next week.”
I wasn’t expecting her to remember him or me. We made a few pleasantries, and I told her the race was starting at 8am. I didn’t want to interrupt her, so I sped up on my bike so she could enjoy her morning ride and solitude. I was so taken back by her presence I really don’t remember what I said as I departed.
There were so many thoughts racing through my head, I was in disbelieve of this random encounter and its timely manner. I just ran into, and recognized – in full bike gear – the woman who we will forever be grateful for. In an instant I was brought back to the days we helplessly spent in NICU unknowing of our children’s health. At that very moment, my pity party ended. I am fortunate to be able to bike on the lakefront, so what if I had a bum hamstring. So what. I am fortunate to have two perfectly healthy children. Two beautiful, kind, funny, sweet, charming, full-of-life, able-bodied children. I am fortunate to be their mom.
In typical fashion, I also started to think of all the things I should have said to Dr. Reynolds. I rode 12 miles south taking in the beauty of the lake and feeling incredibly grateful, and turned around for my northbound trip home. As it turns out, I happen upon that same red jersey around Grant Park. I found a safe opening and pull up along side.
“Dr. Reynolds, I just want to say thank you. Thank you for doing what you do. Thank you for saving children’s lives. Just…thank you.”
When I returned home I was anxious to give my boys a giant bear hug and tickle their beautiful bellies, and share my chance encounter with my husband. He also got goosebumps when I told him of my 25 mile journey. H and I made a cute little video and sent it to his angel who was thrilled to see him thriving. Our boys are a miracle, and for that I am grateful. Happy happy birthday my loves!
UPDATE — January 2018
In January, W was infected with a virus. It effected him the hardest than any other virus he has contracted in his 6.5 years of life. (And both boys have had strep throat, the flu, and various other ailments that are common for school-aged boys.) But this time was different. W battled a high fever for two days and we thought he was recovering, but to our surprise (as this hasn’t happened since he was born), he showed more significant signs of hemolysis. We brought him to the ER, and they confirmed he had the influenza virus. They also confirmed that his blood levels were too low and needed a blood transfusion. This was his first transfusion since he was 1 month old. We feel fortunate that by giving him new blood, he would rebound back to his normal self, but this incident was incredibly scary and a reality check that their G6PD is forever real.