February 18, 2012 our lives were changed forever. We were 18 weeks pregnant and because I was over 35 and had a history of a complicated pregnancy, we opted for a more detailed 2d ultrasound at a high risk pregnancy clinic. Shortly after the test began, I knew there was a problem. The ultrasound technician stated she was going to get the physician to take a look because something was not exactly as it should be. They both examined the screen and discussed the results only to inform us that our baby would have a serious congenital heart defect.
We were devastated. What would this mean? Would our baby live? What quality of life would he have? So many questions and so much devastation we didn’t know what to do or think. The physician proceeded to inform us that there were a number of chromosomal abnormalities that could accompany this defect. We were immediately offered an amniocentesis and informed that if we were to decide to discontinue the pregnancy we would need to make a decision in the next few weeks as the cutoff for termination in the state of Florida was 24 weeks.
We could not believe that our perfect little baby who we had been watching grow for 18 weeks was now a candidate for termination in this situation. So many horrible words and thoughts blurred together. We prayed and cried and cried and prayed. The coming months would be such a mix of emotions. We were immediately scheduled for a fetal echocardiogram to determine the depth of the defect and to make a final decision as to whether we would continue the pregnancy. After much discussion, prayers, and tears, we decided that terminating our little boy’s life was NOT an option.
Our baby’s cardiac defect was known as Hypoplastic Left Heart Disease. This basically meant that the left side of his heart was not developing, and without a series of three corrective surgeries before he turned three, he would die. The key concept in this for us was that it was “fixable” with surgery, so there was hope. We would receive numerous phone calls over the next few weeks as the results of the amniocentesis came in. Each time the phone rang we would hold our breath in anticipation and each time our prayers were rewarded with "no chromosomal defects". We continued to have echocardiograms throughout the pregnancy and each time we would still hope to hear those magic words “this has all been a mistake and everything is fine.” That never happened so we had to think about what was to come and plan accordingly.
The night of Evan’s birth would be a precursor to what would go on to be a roller coaster ride that none of us could have ever anticipated. At 34 and a half weeks pregnant, I had some cramping. Turns out I was in labor and the decision was made to send me to All Children’s via helicopter because of the baby’s condition and the fact that he may need surgery shortly after birth. Evan was born on June 1st 2012 at 19:26. We were told he could be born blue and need immediate surgery but he looked perfect! Tiny and pink, you would never know that without surgery he would not make it.
Five days after he was born, Evan would get bluer, become short of breath and have to go to surgery to rebuild his little heart. He came out of surgery after six hours and the surgeon told us that everything went well. What a relief! Nothing can possibly prepare you for the sight of your perfect newborn baby with his chest split wide open and nothing but a thin opaque dressing separating his tiny newborn heart from you. You could actually see it beating! My husband and I held onto each other and prayed. None of our family had arrived yet but Dan’s mom was on the way from Michigan to help with childcare for our 14 month old and keep our seventeen year old company while we kept a bedside vigil for this tiny baby boy that we already loved so much. Tubes and machines surrounded his tiny body as he fought to heal.
Less than 24 hours after surgery everything appeared to be going well. Evan’s nurse was at the bedside with his respiratory therapist performing routine care. His surgeon had just left for his daily rounds and both of us were hanging out in his room taking turns holding his tiny hand. Suddenly a nightmare unfolded. I heard his nurse say frantically to his therapist “Push the code button. He has no heart rhythm!” We were rushed out of his room because indeed Evan’s little heart had stopped. We stood at the nurse’s station as they performed CPR on our beautiful baby boy. The surgeon rushed back in and they placed Evan on the heart lung machine to keep him alive while his tiny heart healed. We were fortunate that his surgeon had just left the room and was able to come back so fast. He had placed him on the machines so quickly that he had saved his life. Tears of joy and fear flowed freely as we called our families to ask them to join us in prayer for our baby boy. We held each other and our baby’s hand as we begged God for mercy and strength. The coming days would be the hardest of our lives.
Two days later, I received a phone call from Evan’s doctor saying that testing had revealed a bleed in his brain. Once again, we were devastated. After all of this, would our baby now also have brain damage? This was so unfair! In order to be on the heart lung bypass machine for his little heart to rest and heal, Evan had to be on large amounts of blood thinning medication which was in turn causing the brain bleed. To avoid severe brain damage and further bleeding, Evan would have to be taken off the heart lung machine before he was ready and his heart could potentially stop beating and not restart. We had to choose his brain and level of mental functioning over his heart and potential death and we had to decide now. There really wasn’t much to decide because if he didn’t come off the blood thinning medication the bleed would increase and he would most likely be brain dead anyway. So on Sunday June 10th we kissed our baby boy and with tears streaming down our faces we left him in God’s arms while we walked aimlessly through the hospital calling our family members, not knowing if we’d ever see our child alive again.
The coming days turned into weeks and then to months. Everything we had read described a serious surgery with a one month stay in the hospital. We were into month number two and our baby still needed a ventilator to breath because he was too weak to breathe on his own. We saw children come and go and some who didn’t make it as our little warrior plugged on at his own pace. One complication after another, he would become septic, his wound would not heal, his kidneys got weak and he needed the assistance of dialysis. All the while his tiny heart healed and kept beating. We still had no idea what kind of damage the brain bleed had left behind and until he could wake up from the sedation and begin to move and breath we would not know if there was permanent damage or not. No one could give us answers. He would be placed on and off EEGs to monitor his brain waves. It felt like forever once they discontinued the sedation before he would finally move his tiny fingers and toes. Eventually, more than two months after his first surgery, Evan was able to breathe on his own and the ventilator was removed. He had been there so long and had seen so many doctors, that his room contained a full cheering section as that tube finally came out and we got to hear his tiny voice for the first time since his fifth day of life. What a sweet sound that was!
Unfortunately, Evan continued to have setbacks. His little lungs had taken quite a beating and he would have an ongoing battle with oxygen as he grew stronger. He was being fed through a tube from his nose to his stomach and had never eaten anything by mouth. He had no idea how to suck and swallow. By now, Evan was three months old and most of the immediate danger had passed. He did, however, still have a shunt next to his heart that proposed a continuous risk of becoming clotted and we had to be very careful to not allow him to get upset or be in any distress.
Over the next few months, Evan began to move around and behave more like a typical baby. He seemed to move and breathe appropriately and was beginning to look at people and things. He would continue to have terrible days where he would become inconsolable for no apparent reason. He would need several IVs, blood draws and respiratory treatments. One of us would try and be at his bedside at all times but I had run out of maternity leave at this time so it became increasingly difficult to stay at all times and we would take shifts. I would stay for most of the weekdays and Dan would spend the weekends.
Time was passing quickly and our baby was growing fast. We were heading towards the time for Evan’s second stage of repair where his shunt would be removed and his circulation would be rerouted once again using his own vessels. He was four months old and doing well except he had not yet learned to eat on his own. Speech therapy was working with us to teach our baby the basics of eating but it was moving quite slowly. His neurological status continued to improve and no lasting deficits were seen. Discussion began on whether we should take him home or keep him in the hospital for his second surgery. After much deliberation and consultation with his surgeon it was decided that it would be in Evan’s best interest to stay in the hospital rather than risk a devastating infection that would keep him from being able to get the second lifesaving surgery when needed. So we kept our bedside vigil. My mother came from Newfoundland to relieve Dan’s mom, who was helping out with childcare for our now 17 month old. We were so blessed to have such strong family support.
At 5 months old, on November 5, 2012 Evan would go for the second stage of repair of his tiny heart. We were so scared as we sent him off with the surgical team once again. Prayers went out across two countries that God would continue to show His mercy on this tiny baby and show us another miracle. The second surgery went well and everything began to look up. Two days after surgery we removed Evan’s breathing tube once again. He was breathing on his own, but he was weak. A few hours after removing the tube, Evan became more distressed and the tube had to be placed back in. Another long week or so of ventilator support and his tube finally came out and stayed out. Coming off the oxygen was a different story. Evan’s oxygen requirements would rise and fall as well as our emotions since this was a major obstacle to us taking our baby home and FINALLY being a family. Also the feeding issues had arisen again since he was still being fed through a tube in his nose. In order to bring him home he either had to eat enough calories to grow or we had to place a more permanent tube directly into his stomach to feed him through until he could learn to eat. We wanted him home so badly but putting him through another surgery and placing him under anesthesia again terrified us and seemed unthinkable. He kept vomiting up the formula and our frustrations continued. It seemed like a vicious cycle of vomiting followed by dropping oxygen levels. Stomach specialists and lung specialists were consulted, formula was changed, and medicines were added, adjusted and taken away. All to no avail, so we made the decision to place the gastric tube just days before our baby’s first Christmas.
On January 17, I was heading over for my usual week long stay. I picked up my cell phone to call Evan’s nurse for my usual morning report. As the nurse started talking she told me that his discharge orders were written and he was coming home! I couldn’t believe my ears! I was laughing and crying and calling my husband to assemble the crib we had bought but did not assemble because we could not bear to look at an empty crib and wonder if Evan would ever sleep in it. I arrived to see my baby and the room was buzzing with excitement. All kinds of last minute arrangements and tests were being ordered and done so Evan could come home TODAY! I packed seven months worth of stuff into a wagon and we were ready to go. It all seemed so surreal. I was going to get to hold my baby all day and all night if I wanted and I wouldn’t have to hear a monitor beep or share our private moments with anyone! I was so excited I could hardly breathe. Dan arrived, we loaded our van and we carried our baby outside of his room for one final victory lap around the ICU. We said our goodbyes and with tear stained cheeks, we carried our baby out into the world. What a day! I rode next to him in his car seat as he slept peacefully. All was right in the world as our family prepared for the next chapter. We were free to take care of our baby on our own, and with a pile of instructions and equipment we were ready. We could do this!
I thank God every day for the preexisting strength and love of our family. It is the glue that held us together. We had good days and bad but finally the good days were outnumbering the bad and we all got stronger every day. Evan was growing and smiling and quickly becoming a very important family member. The battle isn’t over yet. Evan will need another surgery before he is three and there will be many prayers and tears but so far life is good and we’ve made it! My new job is in the pediatric emergency room and every day I am reminded how lucky we are that our child’s problem was fixable by the hands and knowledge of great medical professionals. God blesses us every day and we are forever grateful. I have gained so much respect for my fellow medical professionals and all that they do.
Evan just recently celebrated his second birthday. He has been getting physical therapy twice a week due to severe torticolis, which is a tightening of the neck muscles and tendons usually on one side of the neck. Our physiotherapist is very experienced and recently sent us for further evaluation with a neurosurgery team because this condition normally resolves itself by now. After having an MRI and a CT scan of his neck, I received a call from the neurosurgeon stating that himself, his partner and the radiologist had spent three hours evaluating Evan's tests and they were in agreement that Evan needed urgent neck surgery. His cervical or neck vertebrae we're not formed properly and we're unstable, which meant that he was at high risk for a spinal cord injury unless he had a cervical fusion done to stabilize his neck. I couldn't believe my ears. My poor sweet baby who was just starting to stand and talk now had to be admitted and undergo major neurosurgery and weeks of recovery!! How was this fair?!!!
My husband and I cried and grieved once again for this poor child who had no idea what lies ahead. We were headed back to the hospital where it all began. The only saving grace was our confidence in the staff there and our level of comfort after bring there for so long. Imagining our little boy in a neck brace with breathing tubes and all that comes with major surgery was more than overwhelming. We met the surgeon who was an amazing man with an excellent reputation, thank goodness. Now we wait. The surgery is scheduled for July 24 and each day it gets closer I hug him a little closer and try and stay strong for my big brave warrior.
Karen, thank you for sharing your beautiful boy with us! He is certainly a brave little man! As you get ready for his upcoming surgery, know that we are thinking of you and wishing you and your family much strength and love.
If you would like to be featured on Tulip Tales, please email me at: firstname.lastname@example.org Please include a brief description of your child and their condition, along with any pictures you would like to share. I will contact you with specific questions.
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