Approximately 1 in 100 babies are born with a congenital heart defect (CHD), making CHDs the most common birth defect in babies.
Approximately 1 in 100 babies are born with a congenital heart defect (CHD), making CHDs the most common birth defect in babies.
In honor of Heart Awarenes Month, I wanted to share my own CHD journey in the hopes that it brings awareness and community for anyone else that has a heart warrior.
This is Phoebe. My heart warrior.
** Trigger Warning** Please stop here if you are triggered by hospital and medical settings. Phoebe is doing amazingly well now but there are pictures and words that may be upsetting for some readers.
In utero she was diagnosed with a small Ventricular Septal Defect or VSD which is a hole between the lower chambers of the heart. It is in fact the most common CHD and can be a symptom of other CHDs. Her doctors expected it to close on it’s own, eventually, but we would keep an eye on it just in case. Little did I know that this seemingly harmless hole, that did end up closing by itself, quite possibly saved her life.
After going through all of the things I’ve been through with her birth and CHD I believe we are thriving now due to divine intervention. Luck wouldn’t have been enough. I have plans to post a birth story but I’m not quite ready yet.
A few weeks after she was born she was diagnosed with a CHD called Partial Anomalous Pulmonary Venous Return, or PAPVR for short. Two of her four right pulmonary veins were misplaced and were draining into the coronary sinus. This would end up causing a backup of fluid into her lungs causing Congestive Heart Failure. Ultimately she would need heart surgery to correct it. A lot of times PAPVRs go undetected because it is only partial. If undiagnosed the heart would end up adapting and change to compensate for the defect. Many are diagnosed later in life during a cardiac event. The only reason we found this was because of the VSD she had.
Her cardiologist wanted to wait until she was about a year old if we could before she had surgery. Bigger babies have a much lower risk of complications and are just easier to work on when the heart isn’t so little. In the meantime, we needed to keep a very close eye out for any signs of difficulty breathing or oxygenating (blue lips or extremities, labored breathing, sweating while feeding, low spO2.) We also needed to keep her healthy. Any respiratory illness could be detrimental to her. This in the middle of a respiratory disease pandemic, nonetheless. Luckily it was 2021 and we had already practiced isolation and masks and everything were still being used.
For almost a year, we waited. We worried. We limited contact with everyone. I stopped my photography business. We went to countless cardiologist appointments and had countless echoes.
In the spring we got her scheduled for surgery with the Chief of Cardiothoracic Surgery at Cook’s in Fort Worth. Her case was a rather rare one so he was interested in her case. Up until this time she never seemed to have any symptoms, thank goodness.
On July 14th 2022, at 11 months old, she had open heart surgery. It was the full gambit: cracked chest, bypass, the whole nine. She was in the absolute best hands at Cook’s but it was still the longest most terrifying time of our lives. Her surgery lasted about 9 hours. Everything went amazing and the repair was final. As long as she doesn’t have any complications, then she will not need any additional surgeries.
She recovered very well. It was really unbelievable Throughout the whole surgery and pre-surgical process we were constantly encouraged by everyone on her team about how amazingly fast babies recover. We were hopeful but when you see your baby attached to all of the tubes and all of the wires, so helpless and sad, it’s hard to accept that she could go home any sooner than a week. But, she did! It was unbelievable. One of the most beneficial things we did to help her recovery was taking her out for wagon rides on the cardiac floor. It drastically boosted her spirits. After that first one, we were already getting our happy baby back and I was able to hold her for the first time. In less than 72 hours she was back to her old self, and we were having the most difficult time keeping her in her hospital crib. We were ready to leave. We packed up and made the three hour journey back home, VERY carefully.
So far, her recovery has been pretty much flawless except for one hiccup we had just two days before her two week follow up. That morning about 4am she spiked a fever. We called the after hours number and her cardiologist, who happened to be on call that night, told us to pack a bag and head to the emergency department when the sun came up. It wasn’t too much of a rush. Of course, we didn't wait. My dad came to stay with Noah. We packed up and were back at Cook’s before 8am. Within the hour, we had bloodwork taken, IV, EKG, X-rays and another echo. Phoebe was overwhelmed. The moment we stepped into the ED she lost it, understandably. She fought the entire way. She had been though some pretty traumatic stuff just a short time ago. It was heartbreaking. Her cardiologist informed us that she had developed pericardial effusion (fluid accumulation) at the bottom of her heart and it was touching her diaphragm causing her pain and weirdly the hiccups. I had noticed that a few days ago but didn’t think much about it. She was prescribed a scheduled Ibuprofen regimen and an echo to recheck and make sure the fluid was going down. She gave us the choice: be admitted to the hospital or stay close and just follow up at her previously scheduled time. We chose the latter. We didn’t want to put her or us through that again. We stayed with our good friends nearby and went to her follow up appointment. The fluid was already 75% gone. She responded very well to the ibuprofen and I could tell she was feeling much better!
It was smooth sailing from there on out.
She passed her 3 month and 6 month checkups with no complications and we were informed that the risk now for complications was very low. We will only need to have yearly check ups with the cardiologist and as she gets older they will probably extend that.
Things I have learned! When you don’t have the opportunity to see your child’s normal it is hard to know whether or not something is a symptom. I noticed some improvements after her surgery and recovery. She is much louder! Her stamina has increased dramatically as well. I thought she was always a pretty chill baby, never too active. Boy, was I wrong! This girl is crazy. Nothing slows her down. She is spunky, full of attitude and fearless and I’m all for it! When you go through something like this it really makes you appreciate the things that would normally be annoying or frustrating.
Also, photos are so important. Even if they are on your phone, take pictures! Every milestone and moment is a gift. I am notorious about living in the moment and often forget to grab a camera or my phone. I know, I know, I'm a photographer how could I forget! It just happens, alot... You can always hire a professional, too. Even I have to hire a professional from time to time! I am back in business and I would love to photograph your moments for you! Hit me up anytime!
Do you have/are a heart warrior? Comment and share your story or message me privately. I'm happy to lend an ear or help if you are going through something similar!
Best Wishes!
Mandy
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