By Nicole Latta
Mommy to Amelia
Congenital Heart Defect – Transposition of Great Arteries
Born in 2024
When my husband and I found out we were pregnant, we were over the moon excited, but also slightly nervous to be parents for the first time! Who will our little one look like? What will their personality be like? How will our lives change for the better? All of the typical new-parent questions and dreams surrounding us. We decided to wait until we saw that precious heart beating at 8 weeks gestation to start to tell our family and friends. We had a very healthy pregnancy; I was never sick and was feeling great!
Fast forward to our 20 week anatomy scan. We were eager to see more our baby. At my OB office, Amelia was breech during the scan and the ultrasound tech was not able to get the heart and spine views that the doctors wanted. Because of that, they sent us for a repeat anatomy scan at the hospital in the Maternal and Fetal Medicine office. The next week, we went in for that second anatomy scan thinking everything was just fine and she was being stubborn and not wanting to move around and show off all angles of her heart and spine. As far as we knew, everything looked great and we waited for the doctor to come in to go over what they saw with us.
He walked in, introduced himself, sat down, and spoke the sentence no parent ever wants to hear: “Your baby has a heart defect.” Immediately our hearts sank into the floor as he continued to explain what she had and what the next steps would look like. As a nurse, once he spoke the words “transposition of the great arteries,” I knew exactly what had happened to her, but didn’t know if they could repair her, or if we would lose our child hours after delivery since this defect is not compatible with life after birth without intervention.
After finding out she would need open heart surgery within the first 4-10 days of life, we were left with more questions than answers and were referred to a pediatric cardiologist to see the next day for a fetal echocardiogram to confirm her diagnosis. Once the cardiologist confirmed she had TGA, he spent over an hour with us explaining how her heart formed, what it didn’t do during formation, what would happen for the duration of my pregnancy, what would happen after delivery, surgery questions, and what her life would look like. Feeling much better than the day prior with most (if not all) of our questions at that time answered, we left the hospital hopeful for the outcome of our daughter’s life.
Expectations and hopes changed after finding out about her diagnosis. While we were still wondering what she would be like and all the other “normal” wonders of your child, healthy or not. But our thoughts quickly became clouded by questions no parents wants to ask. Will I be put on bedrest? Will she make it through open heart surgery? Will we be able to pay for surgery and now two hospital stays? What will the hospital stay look like and will she have any surgery complications?
On January 22nd, after driving through a snow and ice storm to work and working all day, my husband and I met with the NICU team at the hospital to discuss their plan for Amelia. Afterwards, my husband left and I went to my bi-weekly non-stress test and ultrasound to check up on baby. While she looked good on the monitor, my blood pressure was elevated to 140/89, which was odd for me since I had been rock solid in the 120’s/70’s-80’s. The nurse let us continue and rechecked my blood pressure in the middle of the NST and I had dropped to 138/86. When we were finished with the NST, she took a blood pressure again and I was back to 140/88. At that point, I was sent up to OB triage to get labs and urine done to look for signs of gestational hypertension or preeclampsia.
If that isn’t anxiety-inducing enough, my blood pressure then jumped to 151/101! While the triage nurse was still asking me questions, a nurse from the Maternal Fetal Medicine office came up to say that the MFM physician wanted me to be admitted to the antepartum floor overnight for observation since I was full term 37 weeks, 5 days. I called my husband to pack a bag for us and come back to the hospital to stay the night.
The night went well, my blood pressure dropped, and we thought we would go home in the morning. However, around 8AM, my blood pressure was back in the 140’s so I was then going to be moved up to Labor and Delivery to be induced. My original birth plan was natural, no epidural, and no induction unless I had to because of Amelia’s heart. They initially wanted me to carry to 39 weeks, but not 40 weeks. Start of the failed birth plan.
I started induction about 1cm dilated and received my first dose of cytotec. After the second dose my uterus started to contract consistently without much recovery time. Two more doses of cytotec and I’m still contracting non-stop and I’m having intense low-back pain and only dilated 2cm. Overnight, Amelia had three heart rate drops but they were short lived and we were able to get her back up with positioning. Because of the back pain, not progressing, and her decels, I opted to receive an epidural. The OB on call talked with us about having an OR set up for us in case Amelia’s heart rate dropped and we couldn’t get her to recover. The epidural placement went great and once I laid back down in bed, Amelia’s heart rate dropped to 80. Turning on my left and right sides, stimulating her head, and getting on my hands and knees wasn’t enough, so I was rushed into the operating room crying and praying for Amelia’s life and safety for an emergency c-section.
On Wednesday January 24th our beautiful Amelia Rose was born! Definitely not in the way I had imagined or expected, but she was here, and she was alive. We were not able to hold her like we had planned before they took her to the NICU, but my husband got to go with her while I went to recovery. Praise the Lord I had my epidural because I would have been put to sleep for her delivery and that would have been even more devastating to miss seeing her for several hours. The nurse took us back to see Amelia before they took me to my room for the night, and Trevor and I knew that this was the start of her long and miraculous journey.
At 5 days old, Amelia had her life-saving surgery. Leading up to her surgery I was, rightfully so, kind of a disaster. Lots of tears, lots of “what ifs,” and honestly wondering if Amelia was even going to make it out of surgery, let alone come home. There’s a high success rate with arterial switch surgeries, but even then, the negative thoughts still creeped through my mind. Trevor and I just continued to give our baby over to the Lord and ask for His will to be done with her because He knew her, and this was His plan all along. Watching them wheel her out of the NICU and up to the OR was so hard, but after about 30 minutes I just had an overwhelming sense of peace over her surgery. I was able to rest and “relax” while she was in surgery. Of course, the peace increased with our hourly updates knowing everything was going well, and even more when she was out and settled in the PICU.
Looking back through the surgeon’s operative note from that day, he did have a bit of trouble with her heart as she had some unusual cardiac anatomy, but we are very thankful her surgeon was able to successfully switch her arteries to save her life! We definitely were still worried about the night ahead since the first 24-48 hours are so critical, but God protected our little one through it all. Surgery was so successful that even after enduring 2 small complications, Amelia was able to come home after 15 days! And then On Angels’ Wings came and did newborn pictures, bringing a sense of normalcy back to our lives after such a traumatic beginning to our journey.
While we will always worry if she needs another procedure, or what her next echo may look like, will she be insecure about her scar, etc., we’ve learned to just be thankful. Thankful for her life. Thankful that God spared her through pregnancy, her surgery, her recovery, and still to this day. We could have lost her at any point, and we had an unexpected and traumatic delivery, but she made it. She is the strongest heart warrior and fighter I know, and she will forever be our miracle baby!
Amelia is doing wonderful! Her echoes have looked great and show she had a very successful repair. She is growing like a weed in the 74th percentile and is full of rolls that make her cute and chunky! She is a happy girl, so fun to be around, and is such a ham! My hope is that she is able to grow up to be a normal active child and adult, loves herself for who she is, and accepts the way God made her. Her life may not have started the way we expected, but she has an incredible story to tell, and I hope and pray she uses it to encourage and bless others.
In January 2025, we will celebrate Amelia’s first birthday and OAW will take her birthday pictures!
The photos OAW has taken so far are such a blessing to us! Not only to help ease the financial burden and stress of having a medically complex child, but to also use them to spread light on her diagnosis. Having these images show her strength and helped us feel like “normal” parents with opportunities that every parent should have.
I would tell anyone to run to On Angels’ Wings and see if they qualify for your services!! We have been abundantly blessed by the care and kindness of the staff and the volunteer photographers we’ve met. OAW captures incredible moments in a child or family’s journey and brings the phrase “a picture is worth a thousand words” to life.
While the people around you can support you by providing meals for you, babysitting, praying for you, etc., they may not truly understand the stress or situation you’ve been in having a child in the hospital, let alone having one in for a life-saving open heart surgery. Having someone from OAW personally reach out to check in on you and your child’s recovery means so much to you. It means even more when that person has had a child with the exact same diagnosis so they can actually relate to what you have been through and offer encouragement and hope that it will get better. Thank you OAW!!
