Miracle Baby: Remembering Savannah

CHD Month: Sweet Savannah Lou was born a fighter. Shortly after birth, doctors found several devastating conditions. Yet, due to her strength, she lived two beautiful months. 21 years later, Savannah is still inspiring people around the world. We are honored to share Savannah and her family's story. We hope it spreads awareness for Congential Heart Defects (CHD) and the research and funding that is needed.

Diagnosis: Tracheal Esophageal Fistula (TEF) & Hypolplastic Left Heart Syndrome (HLHS) in Feb, 1998

Savannah Lou's Journey:

"We learned about Savannah's TEF shortly after birth. They immediately took us to the local Children's Hospital and ran scans. Birth defects are common with TEF. That was when they found the Hypolplastic Left Heart Syndrome (HLHS). HLHS is a birth defect that affects normal blood flow through the heart. Sadly, the left side of Savannah's heart did not form correctly. She would need additional help.

Savannah WAS a miracle baby – doctors didn’t give her much of a chance, but she did amazing through her two surgeries (one for the TEF and one open heart surgery for HLHS). Before the open heart surgery they told us it wouldn’t be “pretty” when they brought her out. They said she would still be “open” to heal and that they would have to close her up later. When they came out of surgery, the doctors were amazed that there was so little swelling and that they were able to close her up. She looked perfect. One of the nurses came into the NICU and said “when they told me what her situation was, I walked in expecting a train wreck… and instead I see this beautiful baby laying here!” We believe that was all God.

We were in the hospital for 1 month with Savannah, but then we were able to go home. She did amazing! Everyone at the hospital was SO excited and happy for us. We enjoyed another full month at home with Savannah – we lived our lives as normally as we could. We took her to church, school, walks, out to eat, and even yard sales. We were determined to make her a part of our everyday lives and we did. Today, our family has beautiful, everyday memories of Savannah.

Savannah passed away on a night like any other – she slept in our room and I heard her having trouble breathing (she was a little congested and we had taken her to the doctor) so I tried to help her with that. We had just gotten her settled down and I was just sitting in bed holding her. We were both wide awake and I noticed something had changed in her breathing – it had stopped. My husband, Mike, immediately started working on her and I called 911. Our neighbor was even an ER doctor. We went through all of the right motions, but she never came back. We know now that she went straight from my/our arms to the arms of Christ. She will always be a part of our lives and one day our family will be complete in Heaven."

2. If you could teach the world one thing about your child’s condition, what would it be?

"Savannah was my 4th child - I didn’t realize anything different or abnormal – her condition took us completely by surprise. Today, I believe they can check for HLHS and even do a surgical procedure inside the womb. Yet sadly, this isn’t a preventable defect. There were no warning signs, nothing for parents to watch for. Yet, they did say I would have never felt hiccups from her (not that I noticed it) because her esophagus wasn’t connected to the stomach.

3. On hard days, what is something that helps you through?

"For us, talking about Savannah with each other or friends who were there with us, helps. Knowing that we will see her again… looking at pictures of her and knowing that we did everything in our power to give her a chance."

Take Pictures: "You can’t imagine how I wish iPhones were a thing in 1998 – I took as many pictures as I could, but that was back when I had to actually get my CAMERA out in the midst of taking care of 4 children under 7 (one of which had an G-tube for feeding). The pictures we have are PRECIOUS to us! One of our friends came over after Savannah Lou passed away and took our camera and all of the film and got it all developed for us."

4. What is one thing you have gained during this journey?

"A stronger faith in God’s provision – I know we couldn’t have made it through ANY of this without faith.

We believe that God knew that Savannah (who was named after one of the ships my dad was on in WWII) would only live for two months. We believe that he allowed circumstances in her life so that she could influence many people for Him. People were praying for her all over the country and across the globe – all through word of mouth basically. We have so many stories about people praying and hearing about Savannah. One couple told us that they hadn’t prayed in years, but that our situation had brought them closer to God. The nurses and doctors were stopping by her room to see “the miracle baby” during the month we were in the hospital. "

5. Is there anything you would like to say to another family battling this condition?

"I hope and pray you get to be in it for the long haul – we only had 2 months with Savannah Lou. We knew we would be facing at least 2 more surgeries over the years and we were ready for that. The one thing that struck us was that some of the Physicians encouraged us to give her comfort care b/c they weren’t sure she would survive the surgeries (2 in the first week of life). We had to know that we gave her every opportunity for life and we gave God complete control of the situation."

6. How can others support a family enduring this? Is there anything that can be said or done to bring any comfort?

"We were blessed by MANY people coming to the hospital for both of her surgeries to sit with us, talk, laugh, pray and eat. Friends and church members also came regularly to visit us during our one month hospital stay. Two men from our church came almost daily at different times and prayed over her and gave me a chance to run to eat/etc. Those two were so special to us that we asked them to be her pallbearers… they carried her all through life.

People brought us food and cared for our other children – that allowed Mike to continue to work and I could stay at the hospital all day with Savannah. Basically, Mike and I tag teamed. Neither of us wanted her to be alone, at all. I stayed during the day and a dear friend watched our children, Joshua (7), Samantha (5) and Suzannah (2) for us daily.Mike stayed at the hospital every night – at first, he would have to move multiple places (whenever a guard made him!) because she was in the PICU and NICU. When she finally got in a room, he could at least stay there.The love and support we received from our friends was amazing. Neither of our families live nearby so even though they came, they sadly couldn’t stay for long.

After she passed away, the support and love continued: cards, food, visits – one friend gave us one month of freezer meals! I can’t express how much all of this meant to us. My mom came and stayed for 2 weeks (my dad had just passed away 2 months before Savannah was born – unexpectedly) and I honestly can’t remember her being there except that she just sat with me and loved all of us. This was all before the internet… we had some emails that we sent out to people but most of this was word of mouth and land line conversations. It was amazing!

My advice is to reach out in any way you can – a “late” card is still a blessing, a delivered meal – store bought or home cooked, a gift card, a text/email – anything to let people know you care! Also, pray. Prayer held us up and kept us going day after day. We wouldn’t have been able to get through this without the daily prayers of family, friends and complete strangers."

7. How can people help?

"Volunteer. My goal is to volunteer at our local Children’s Hospital to sit with children if their parents can’t be there – hold babies, read to children, play games – anything. Also, our church has prepared meals (and we plan to do this again) at Ronald McDonald House."

8. Is there anything else that you would like to share about Sweet Savannah and her time with you?

"While our hearts are broken that she isn’t with us, we trust God. We know we will spend eternity with her. We compare learning to live without her ,like learning to live without a limb – we are always aware she isn’t here on earth with us but we have to adjust to life without her. We love talking about her but we don’t dwell on the fact that we have lost a child. We live in the victory of Christ and eternity and to live in sadness each day would be wrong."

Interviewee(s)- Lorie (Mom) & Mike (Dad)