Hattie's Story

Hattie Blake Heasley was born on May 24, 2017 on a chilly Colorado spring morning. The months leading up to her birth were a whirlwind of moving to a new state, taking on a new job position, doctors visits and preparing for our little girl to arrive. We found out we were pregnant with Hattie a week before moving from Dallas to Denver and with everything going on, the months had flown by.

The pregnancy was fairly smooth, with a few bumps here and there as many pregnancies have. We had learned that Hattie likely had microcephaly (a small head) and she was on the smaller side for much of the second and third trimester. While my pregnancy wasn't deemed "at risk" at any point, we still had ultrasounds and doppler scans every other week from 30 weeks - birth. Needless to say, we were just ready for our little girl to get here.

At 10:29am on May 24th, we became parents to a 6lb, 13oz little girl. We couldn't stop staring at this miracle that God had given us. The fact that two humans can make another human still blows our minds. It's simply incredible. Family and friends were there to welcome our little Hattie into the world.

Somewhere in the afternoon, we had made our way from Labor and Delivery and into the hospital room where we would stay for a couple days before taking Hattie home. We were getting much needed rest and relaxing with family when Toa (my Mom), noticed that Hattie was not looking right. The nurses were called and it was clear that Hattie had stopped breathing. She began to turn slightly purple and was motionless when picked up. In a second, the room was packed with what seemed like 20+ nurses as they administered oxygen and got Hattie breathing again. I wish that I could get that picture out of my mind, but I don't think I will ever forget it. I felt hopeless laying there in the hospital bed, watching them take my baby girl away after only spending just a few hours with her. 

Throughout the afternoon and evening, Hattie had about five more episodes of respiratory failure. It was terrifying, discouraging and everything you don't expect on the day your child is born. They transferred Hattie to the NICU where they gave her a central line of antibiotics, began blood cultures and every other test in the world to figure out what was going on. 

Over the next three days or so, we lived in the hospital room so I could recover, visiting Hattie in the NICU frequently throughout the days and nights. We would go down to the NICU and feed Hattie, hold her when we could, or just sit in the room and pray for her. We still had no answers as to what was causing the respiratory failure. As the days went by, test results came trickling in - echocardiograms were negative, CT scans were negative, cultures were negative, blood tests were negative... everything came back negative and Hattie seemed to be just fine. We were thankful for progress and health, but still frustrated that we didn't have a diagnosis.

We took Hattie home on May 28th. It was a relief and an incredible feeling to have her in our home, in her nursery, and loved on by our family. No more IV's, heel pokes or medicine... just us. There was a sense of guilt leaving the NICU as there are so many babies - preemies, sick, disabled - that have to spend months and months in the hospital. If anything is for certain, it is that NICU nurses are angels and NICU parents are superheroes. 

Three days later, we found ourselves back in the hospital as Hattie was showing high levels of bilirubin (jaundice). She had to be under the infrared lights for a couple days, which is pretty common, but it was still disappointing having to go BACK to the hospital. 

After spending 2 more nights in the hospital, we finally got to go home on June 1st! It was the best news hearing that her bilirubin had finally gone down. Yay for no more jaundice!! Through June, we'd had Hattie home for about a month and it was amazing. There were so many new things to learn and experience with a baby - diapers, baths, feedings, pumping milk, car seats, late night wake-ups, etc etc etc. We had newborn photos done, had friends and family visit, and even took Hattie on her first trout fishing trip. She was doing great and, while still growing slowly, was a healthy and happy baby girl.

Friday, June 23rd, was the scariest day of our lives. It was one day before Hattie turned 1 month old when we noticed that something wasn't right with Hattie. She started to turn blue, and her little body became limp. We immediately took off her onesie and laid her down on the kitchen counter. Normally the coldness of the granite would make her scream and cry, but she just laid there still as could be. We called 911 and the ambulance arrived quickly. Hattie had come out of this apnea episode on her own and of course was looking just fine by the time the paramedics arrived. They ran vitals on her - oxygen, heart rate, etc all looked just fine. They advised us to call our pediatrician and keep an eye on her. Not ten minutes after they left, Hattie had another episode - dusky, no breathing, motionless. Something was obviously wrong. We called 911 again and this time four police officers arrived before the same paramedics came back. They loaded her in the ambulance and took her to the Children's Hospital which was luckily just a few minutes away. 

Hattie had about five more episodes - one in the ambulance and four in the ER. It was terrifying. They flew in a chopper to care flight her to the large Children's Hospital in Aurora, but fortunately got her stable enough to take an ambulance later that evening. They wheeled Hattie out the doors of the ER on a stretcher, her little body surrounded by cords, tubes, wires, monitors and oxygen tanks. It was heartbreaking, terrifying, confusing and discouraging. Throughout the entire situation, we felt confident she would eventually be okay and we knew God was in control. The frustrating piece of all of it was not knowing answers. Nobody could tell us what was wrong and why this was happening. All the Doctors would say is "she is really sick", and every time we heard that our hearts just sank to our stomachs. It is a gut wrenching feeling that I never want to feel again.  

Our good friends, Bobby & Megan Paulk were flying in that afternoon to spend the weekend with us and meet Hattie. All of this happened while they were in the air, so when they landed we had to break the news that this weekend wasn't going to be the fun weekend we had planned.

Although we didn't have the "fun" weekend we had planned with Bobby & Megan, it was such a blessing that they were there for us that weekend. Having friends by your side, to pray over you during hard times like this, is so comforting. Hattie had several other visitors throughout the week including her Bert & Toa, Essie, Coy, Katie, the Devin's, and Andrew. 

Hattie turned a month old in the NICU. They had her hooked her up to a ventilator, an IV, and were administering antibiotics. Not the most ideal "1 month happy day", but at least we were together and she was getting better. They again did every test in the world - blood cultures, urine tests, CT scans, MRI, echocardiogram, EEGs and what seemed like every test in between. The NICU doctors, nurses and staff were unbelievable. Our attending Neonatologist, Dr. Mandell, was amazing. She really took Hattie under her wing and was clear with us regarding everything she was learning about Hattie. We were in the Children's Aurora NICU for a little over a week.

Throughout the week, results started trickling in. Two of them stuck out - first, she had a urinary tract infection. Since she was so young and little, her immune system likely could not handle it and had made her sick. Second, her CT scans showed some minor brain malformations. They said this may have also attributed to the apnea episodes which may have not just been respiratory failure, but also possibly seizures. This was obviously more concerning, so it was decided to move forward with genetic testing. They took samples of her blood and sent them off to Chicago for testing - results would be available in 4-6 weeks. On July 1st, we took our little girl back home again.

Right when we thought we were getting the "parent thing" down... we felt like we were starting all over. Every tiny noise she made, we found ourselves running over to her making sure that she was still breathing. Despite our worries, Hattie was doing great at home. She was moving, kicking and even starting to sleep pretty well. Obviously, sleeping for US was a different story. It was impossible to get a good night's rest with the thought that Hattie might stop breathing or have another seizure. Our saving grace was this pulse oximeter sock called The Owlet (www.owletcare.com). This little sock saved (and still saves) our sleep schedule and puts us at peace throughout the night. It tracks her heart rate and oxygen levels and alerts us if they ever drop or rise to concerning levels. Shout out to Owlet for making an incredible product. 

Friday, July 28th we were told genetic testing results were in and we had a meeting with the doctor back at Children's Aurora. We were nervous, but happy that there was news that would possibly give us some answers and give Hattie a solid diagnosis. We met with a doctor, a physical therapist and an occupational therapist. They explained to us the process for the testing, how in-depth it is, and then gave us a brief refresher on middle-school level Life Science (which we needed). They then told us that Hattie was missing a piece of her 1st chromosome. It is the Q side of the 1st chromosome at bands 1q43 and 1q44. The specific name for this chromosomal deletion is 1q43-1q44 and it is extremely rare. In fact, there are only 55 known reported cases of this deletion in the entire WORLD. They said symptoms from this syndrome included seizures, brain malformations, microcephaly and apnea. Everything started to make sense. They told us that we would have to be Hattie's advocate as many doctors would not be familiar with this syndrome.  

I can't even begin to describe the emotions that came over us that day. At home, we felt like a normal family, and of course we think Hattie is perfect (because what parent doesn't think their baby is perfect?). But, after hearing the news from the geneticists, we were just shocked. Thousands of questions raced through our minds. Will she be able to walk? Talk? Go to dance class? Live by herself one day? Will she have health problems? There is such a broad spectrum on what her life might look like. Some children with this deletion don't ever walk or talk, and some go on to live completely normal lives. Trying to predict Hattie's future is impossible, and that's where our faith in the Lord has really helped us. We know that God is the ONLY one that knows what Hattie's future is going to look like. We just have to continue to be loving and supportive parents, and trust in Him. 

We love our Hattie girl more than anything else in this world. We are nervous, but so excited to experience life with Hattie Blake. We hope that through this blog we will be able to spread awareness for rare chromosome deletions. Thank you for reading :) 

-Abby & David Heasley