When a Warrior Mama Raises a Warrior Baby
When most Mamas find out they are pregnant, the excitement is consuming! The pure joy of being pregnant, meeting your baby for the first time, and watching them grow is the greatest gift in life. However for some, the joy can turn to stress and anxiety when told life changing news.
Holly was an excited Mama to be. Ecstatic with her first pregnancy, and preparing for her new life as a Mama. Her life changed in an instant when she was told her baby suffered from a heart defect. Holly and her husband immediately stepped into their new roles as the protector of their baby. They became their babies advocate, and fought for their babies survival. This is the journey of a Warrior Mama who brought a Warrior Baby into this life. This is the story of Holly and Frankie.
New Life Begins
I always had a strange “intuition” that I would have trouble getting pregnant. So a few months after our wedding we decided to “not-not” try. I wanted to avoid stressing about getting pregnant as much as possible (although that seems impossible). Our philosophy was if it happened: then great, if not, then we would take additional steps. We executed our plan in January and by March I was pregnant. We were both shocked! I became pregnant without any difficulty and overall I felt good. It seemed like the situation was too good to be true.
We were blissfully unaware of any complications or issues with the pregnancy up until the 20 week anatomy scan. My OBGYN sent us to an MFM because I carry a beta thalassemia trait which causes me to be anemic and have a low hemoglobin (but really, I’m fine). I remember thinking my doctor was over reacting and it was silly for me to see a specialist. During our first and only visit with the MFM, they discovered the baby has a severe heart defect (totally unrelated to the beta thalassemia). Nobody prepares you for news like this. There is no chapter in “What to Expect” that instructs you on how to process this type of news.
Shock, Denial, and Acceptance
I stopped breathing. I was shaking uncontrollably and I began to pray. My soul left my physical being while the doctor was explaining what he saw on the ultrasound. Our baby was missing the left side of her heart (Hypoplastic Left Heart Syndrome) and for any chance of survival she would need a minimum of three open heart surgeries and ongoing care for the rest of her life.
This could NOT be happening- there was NO WAY this was happening. These type of things did not happen to me. These type of things did not happen to ANYONE I knew. There HAD to be a mistake. I was ready to wake up from this nightmare that I was never meant to be in. Unfortunately, I never woke up. This was real. This was the hand we were dealt. It was time to pull ourselves together, accept it, and deal with the situation head-on. It was time to be strong- it was time to find our faith- and it was time to fight.
Fighting Is The Only Option
The doctor explained that the heart defect was a fluke and it would not happen again. In so many words, he was advising us to terminate the pregnancy and simply “try again”. If we were to continue with the pregnancy then he recommended, or insisted, that we transfer care to The Children’s Hospital of Philadelphia. Although this specific heart defect is extremely rare and very severe, CHOP is one of the best hospitals in the world for it.
I’m really not sure how to describe how we felt leaving that appointment. I think I was in shock. I didn’t cry and I never stopped shaking. I remember my husband stopped to hug me in the parking lot but I don’t think I comprehended yet what we were just told. I remember handing him my car keys and asking him to please drive home.
When we got home, I broke down. Both of our moms came to be with us. It was the most emotional and impactful day of my life. My husband and I never needed to have a conversation about what we should do. We automatically agreed we had to give our baby a chance to fight and we would do whatever it took to save our daughter.
Love Shines Through
Although July 5, 2019 was the worst day of my life, it was also the day I fell more in love with my husband. We were immediately on the same page and in agreement. The amount of love, support, and empathy he showed served as confirmation that we would get through this.
Three days later we had an appointment at The Children’s Hospital of Philadelphia to meet with a pediatric cardiologist and to have a fetal echo done. The echo confirmed what the doctor saw on the ultrasound. We went from having a normal, healthy pregnancy to something completely different. It was hard to wrap my head around how this could be happening. The team at CHOP explained how they would monitor the duration of the pregnancy, I would deliver the baby there, and ultimately how they would save our baby’s life.
The Prepping Begins
The next step was to have an extensive anatomy scan done by CHOP’s MFM team and meet with a genetic counselor to verify there weren’t any additional defects. Moving forward- the baby would need a fetal echo every four weeks to monitor her heart and any changes. At the initial meeting with the cardiologist, she explained that there is a hole in the heart that plays a crucial role in the circulation after birth. In order to prevent further complications, it was critical that the hole remained open. If it were to close, then the baby would require an intervention immediately after birth. This is referred to as an “Impact birth”. An “Impact” is an “all hands on deck” approach that involves a scheduled c-section with an operating room and team of doctors ready and waiting.
The Power of Faith
There was absolutely nothing that could be done while the baby was in utero. This was very difficult to come to terms with. As a mother, I would do anything and everything to help my baby or to improve the outcome. Unfortunately, there was nothing I could do. I was powerless. I had no restrictions and was told to just continue having a “healthy” pregnancy. I went back to work and resumed normal life. I turned to God and my faith during this time. I believe in miracles and I knew I needed God now, more than ever. I prayed all of the time and went back to church. My faith in God is what gave me the strength to persevere.
A Bumpy Road Ahead
The duration of the pregnancy consisted of many hematologist appointments (I was fine), multiple OBGYN appointments (I had gestational diabetes- annoying), and monthly fetal echo appointments at CHOP. Everything seemed status quo until one echo in late September. The head cardiologist of the fetal heart program entered the consultation room instead of our normal cardiologist. Social workers and other doctors accompanied him. At this point I realized this was not a typical follow-up and we were about to hear bad news. The doctor informed us that the hole in her heart was beginning to narrow, restricting the blood flow from her heart to the lungs. We were told that we would probably be looking at an “impact birth”. However, additional testing would need to be done to determine the severity of the blood restriction.
The following week I was scheduled for an MRI and an amniocentesis. The MRI would show the lung development. Due to the hole getting smaller, blood flow to the lungs was restricted causing the lungs to be compromised. I am claustrophobic so the MRI was pretty terrifying. I told myself I had to do it for my baby and ultimately got it done.
A Positive Outlook Ahead
The amniocentesis was a different story. Due to the severity of her heart defect, if there was an underlying genetic condition, they would not operate. A risk of an amniocentesis is preterm labor. Therefore, I refused it. At 35 weeks, I couldn’t justify getting the amnio to potentially go into labor and ultimately have no answers. It would all be done in vain. Luckily, the MFM concurred with my decision. She explained that because there were no other defects or growth restrictions, in conjunction with a confirmed negative free-cell DNA test, there was no reason to suspect the baby had a genetic condition that would constitute not to operate. Furthermore, the results of the MRI confirmed the lungs were normal and healthy (THANK GOD!). The MFM presented this information to the cardiologist and he agreed it was acceptable to proceed without the amniocentesis.
The following echo, yielded better news. The hole did not look as small as it did previously. The doctors agreed that an “impact” would not be necessary. In order to achieve the best outcome, it was vital I delivered the baby at The Children’s Hospital of Philadelphia. Being nearly two hours away from the hospital, we were advised to relocate at 36 weeks gestation. On October 24, 2019 (36 weeks, 2 days) we packed up and moved into the Ronald McDonald House of Southern New Jersey in Camden, New Jersey.
The Final Step
We spent the majority of our days watching TV, playing cards, doing puzzles, and socializing with other house members. My due date was November 19th, and we had an induction scheduled for November 15th. We had an uneventful check up on November 4th but because I was on medication for my gestational diabetes, the MFM recommended I be seen twice a week. We scheduled my next appointment for that Thursday- November 7th. I was also scheduled for my final fetal echo.
The echo went as well as we could hope. The hole remained stable and the plan stood to proceed with a normal birth. Next was the routine check-up and after we planned to go out for lunch. During the ultrasound I noticed the technician was continuously circling my belly. I instantly knew something was not right. I asked what the problem was and she said my amniotic fluid was low.
The Unexpected Time Has Come
When the doctor came in to take a look she informed us that we would not be leaving the hospital and I would be admitted. I was 38 weeks 2 days- I was so afraid that it was too early to have the baby but the doctor reassured me that everything would be okay. To say I was scared is an understatement. I was petrified. I knew this day would be here soon enough- but not today! Not like this! I wasn’t ready. I needed time to prepare, mentally and physically. But that was not an option. The time had come and it was now. I knew the induction process could take days so I figured we still had time until the baby was here.
Frankie Has Arrived
They brought us to a room in the SDU (special delivery unit) where I changed into a hospital gown and was hooked up to monitors. They began the induction process but not long after the doctor delivered the news that the baby was not responding well to labor and I would need a C-section. This meant the baby would be here today. Everything was happening so fast, I didn’t have time to process it. They brought me back to the operating room and began the C-section. At 9:38pm on November 7, 2019, Frankie Rose Thorne entered the world- pink, screaming, and crying. They held her over the curtain so I was able to see her before a team of doctors waiting in a connected room came and took her. My husband was able to follow her into the room while I was stitched up and brought to recovery. They brought Frankie to my bedside so I was able to see her before she was transported to the Cardiac Intensive Care Unit. She was in better health than they anticipated. This was confirmation God had heard and answered our prayers.
Surgery Number One
Frankie underwent her first open heart surgery four days later on November 11, 2019. Walking her down to the OR was the longest, most difficult walk of my life. I cried the hardest I have ever cried and prayed the hardest I have ever prayed. Our family was there for support while we waited. Seeing her for the first time after surgery is something you can never prepare for. Our newborn daughter was sedated, paralyzed, intubated, and every inch of her body was covered in tubes and wires. I could not comprehend what my baby just went through but I so badly wanted to trade spots with her. The surgery itself was a success but the road to recovery would be long with one step forward, two steps back. For the next six weeks we spent the majority of our time at the hospital. Only leaving to sleep and shower at the Ronald McDonald House in Philadelphia. When you are dealing with something like this you go into survival mode.
My world stood still. I could not be bothered with work, holidays, or the outside world. Every ounce of my being was invested in my child and her recovery. I was completely consumed with learning the medical terminology, the different medications, and understanding her care plan. I was determined to advocate for my daughter the best I possibly could.
Home For Christmas
Those 48 days were anything but easy. There were some days I thought we would be leaving the hospital without our baby. However, on December 24, 2019, Christmas Eve, we were finally headed home with our baby girl. As first time parents plus her medical needs- we were scared shitless. Frankie came home with a feeding tube that she was fed through every 3 hours and she needed multiple medications. It was critical for Frankie to gain weight prior to her second surgery. She didn’t breastfeed and she barely took a bottle. I would pump as much and as often as I could. We fortified my breast milk with formula for extra calories which she got through her feeding tube.
They refer to the time between the first and second surgery as “interstage”. During this time babies are considered to be extremely high risk. Throughout our journey we connected with other parents and developed bonds that only people going through the CHD journey could understand. Unfortunately, two of our friends lost their children during the interstage period, which really affected me. By the grace of God Frankie’s interstage period was uneventful. It consisted of monitoring, feeding, and lots of sleepless nights. We never took her out of the house and were very strict with visitors. By March 2020 the rest of the world decided to join our bandwagon and COVID-19 put the world on lock-down.
Surgery Number Two
Despite the global pandemic- it was time for Frankie’s second surgery. I was a nervous wreck but in order for my daughter to survive she NEEDED this surgery. When I put it into perspective that she would not survive without this surgery I found it easier to cope. On March 30, 2020 we once again packed up and headed to Philadelphia.
The second surgery went much smoother than the first. There were no setbacks and Frankie recovered beautifully. During her admission we made the decision for her to get a G-tube placed so she would no longer have an NG tube. An NG tube is a feeding tube that goes through the nose, down the throat, and into the stomach. Frankie absolutely hated this and would pull it out every opportunity she got. A G-tube is a little button that goes directly into the stomach but requires a surgical procedure. Feeding alone warrants its own article- so I won’t get into it.
Home Sweet Home
On April 11, 2020 we headed home, one day before Easter! We felt so relieved to be home and for her second surgery to be behind her. She is currently doing great. She still has the feeding tube but she eats different purees, puffs, and loves drinking water. She went from taking four heart medications to one. Frankie is an active nine month old that absolutely loves playing and is always on the move!
At the end of April I went back to work and started working from home. It wasn’t an easy transition and it has been a challenge working fulltime and taking care of Frankie. Additionally, I have been struggling with my mental health. I was so focused on getting through her first and second surgery that I couldn’t process any other emotions. Once both surgeries were behind us- it was time to deal with my post-partum anxiety and depression. I was put on an antidepressant and an anti- anxiety medication during her first surgery. Since then my medications have been changed a few times. I see a therapist and a psychiatrist regularly. I know my mental health is something I will have to work on for the rest of my life.
Although I never asked for this life- I am grateful for it. Life doesn’t always go according to our plans. But I have found that God’s plans are far better than mine could have ever been. Frankie’s heart defect wasn’t in my plan and wasn’t what I ever envisioned for my child but it was what God had in store. As much as I hate to admit it I have definitely questioned “why me?” and was angry that God wasn’t following MY plan. But now I am grateful he didn’t follow my plan because HIS plan gave me Frankie. His plan made me stronger. This road has not been easy and there have been times I felt the load was too heavy to bear. But the difficult times have taught me to appreciate the good times. That there is no happiness without sadness and without the struggles there would be no joy. So I thank God for THIS journey, THIS path, and THIS life. Thank you Lord for listening to my prayers, but for knowing better. Thank you for making me Frankie’s mom.
Holly, her husband Tim, and Frankie are a remarkable family. They are warriors, and in the darkest times are able to support one another with love and strength. That love and strength helped them become the parents they needed for Frankie. Frankie’s fighting power is a direct result of her parents love.
Holly, Tim, and Frankie will be participating in the 2020 Virtual CHD Walk for Hope on Sunday, September 27, 2020. CHD Coalition’s mission is to support families impacted by a congenital heart defect. The annual CHD Coalition Awareness Walk brings families together to celebrate and honor our heart warriors. Congenital heart defects are the #1 birth defect worldwide and is the leading cause of all infant deaths in the United States. Nearly 1 in 100 babies are born with a CHD. Research is greatly underfunded but with your help we can bring much needed awareness and fund groundbreaking research to help improve and extend the lives of those born with a Congenital Heart Defect.