Neil and Kristi Hayden knew that their second daughter, Jordan Grace, would be born with a heart defect. As much as parents can come to terms with this kind of news, the Haydens prepared themselves. But after Jordan was born on March 20, 2012, doctors found further complications. Neil and Kristi were told four separate times that Jordan would not survive. But she did.
Neil Hayden, 31, and his wife Kristi Hayden, 30, are both teachers for Daviess County Public Schools. Neil is currently a social studies teacher and boys’ basketball junior varsity coach at Apollo and Kristi is a kindergarten teacher at Tamarack Elementary School. They have been married eight years, but started dating in 1997 while they were both attending McLean County High School. The couple married in 2004 and in October 2009 they had Riley Faith, their first daughter.
Can you tell us a little about your daughter’s diagnosis?
Neil: Our daughter, Jordan Grace, has HLHS. This is a rare heart defect called Hypoplastic Left Heart Syndrome. This defect occurs in one in every 100 births. This means her left ventricle chamber of her heart did not develop in the womb and it will not ever develop. This will potentially affect her the remainder of her life, but a lot is still unknown since the oldest living person with HLHS is around 42 years of age. Modern medicine has helped to advance treatment but the heart defect affects each person differently. Best-case scenario is that she may be on medication the rest of her life and she will get exhausted faster than most people.
Jordan will need three surgeries in her first three years of life, which will change the direction of her blood flow. The first surgery is supposed to take place within the first week of life, the second after her fourth or fifth month of life, and the third surgery between 2 and 3 years of age. However, Jordan has an even more rare situation. At 32 weeks pregnant we were made aware of HLHS, but what we didn’t know is Jordan had a second complication. She has an intact atrial septum, meaning the blood could not flow through her heart and she was getting a backflow to her lungs, which kept her lungs from fully developing. This has significantly delayed Jordan from being able to have her first surgery. The doctors need her lungs to become stronger and have appropriate blood flow. The only way to fix this problem is time. At the moment we have been in the hospital four weeks and the doctors believe it may be at least two to three more weeks until she can have her first surgery. If and when the first heart surgery is completed, it may be an additional two to six weeks for her to recover from the surgery. The major concern with waiting for her lungs to develop is possible infection from the lines that give her the medication she needs.
The first two weeks were very difficult. Jordan was not strong enough to have consecutive good days. Four times in the first two weeks we were told that she may not make it much longer and we should contact our family. We actually arranged some family photos because we thought it would be the only chance we would have in order to have everyone together, meaning myself, Kristi, Jordan and our 2-year-old daughter, Riley.
How did you as parents feel about her diagnosis? How do you cope?
Neil: I think we have been able to deal with the situation we are facing for several reasons. First and foremost, we trust God’s plan and His will. Through prayer and scripture reading we have been able to face this adversity knowing we have an eternal blessing in this situation. We realize God can heal her (James 5:15). We don’t know why Jordan is facing this, but it doesn’t change our faith in God. God has placed people and scripture in our lives each day to give daily grace. It’s been interesting to see how God has been with us each day. I honestly mean that, I could share several stories to show how God has suppressed our anxiety and fears in all of this.
When we were first told of the diagnosis, Kristi and I faced overwhelming emotions. We have shared many tears together, but Kristi has approached this one step at a time. She knew it wasn’t anything she had done, so her only option was to take small steps and prepare for the situations we knew would be presented. Most importantly, Kristi treated this like her first birth. She had baby clothes made, prepared the nursery, and has displayed excitement like she did for Riley. I believe this is important to not hold back any excitement or love for our newest addition.
Kristi: When we found out her diagnosis, I felt very helpless. After the initial shock of finding out we began to hear stories of children with the same heart condition who were doing incredibly well. After a week or so I could talk about it without crying, but then it was just the fear of the unknown. We knew God had a plan in all of it, but He wasn’t let us in on it just yet.
What has been the most challenging part? Are there any rewards or lessons you have gained from this experience?
Neil: The most challenging part is the waiting and the unexpected. The continual delay for the first surgery was unexpected and it has been a slow process. The most challenging moments have been the four situations in which we thought we might lose her. Having to prepare yourself for those moments are very difficult and having to call loved ones and explain the situation is something I would not wish upon anyone.
There have been many rewards, but one stands out for me personally. The last time we had to call our family to come back to Louisville my wife refused to accept it. She continually dismissed the notion that Jordan was not going to pull through. I have to admit after the fourth time of hearing this I had slowly began to think Jordan may not survive. I was encouraged by my wife and it was amazing to see her strength and resolve.
Kristi: As a mother, the hardest part for me, besides the possibility of losing her, has been not being able to take care of her, like feed her, hold her and rock her. Now that she has been more stable, the nurses have let me change her diapers. I never thought I would be so happy to change a poopy diaper! Neil and I also had the wonderful privilege of getting to hold her on Easter.
I remember the first time we saw her open her eyes. We were standing at her bedside early one morning when there was a room full of doctors making their rounds, discussing the next steps to take in her care. I was facing a window when the sun started rising and with tears in my eyes and my husband’s arms around me the sun hit my face. I knew then that everything was going to be okay. It felt like God showing me His grace and telling me I could finally breathe.
Can you describe her birth and the emotions you felt?
Kristi: It is so hard to describe her birth because I could not help being excited for the new life coming into this world, but I was also scared out of my mind knowing what she was going to be facing. I tried to push those scary feelings away and focus on bringing her into this world safely. I was induced at 39 weeks so I could give birth in Louisville. She weighed 8 lbs. 6 oz. and was 20 inches long. This was our first blessing because the bigger she was the better. The doctors wanted her to be at least 6 lbs. before surgery, so that was one less hurdle we had to jump. I had really good labor and deliveries with both of my girls. Giving birth is one of the most amazing feelings and I am blessed to have been able to do it twice.
What kind of support have you received since your daughter was born?
Neil: The support has been amazing. Apollo High, Daviess County Middle and Tamarack Elementary have been very supportive. Co-workers have donated Kristi sick days, given us, including Riley, gifts as well as money. Area church pastors as well as our own pastor, Greg Faulls of Bellevue, have called us and stopped by to pray with us. Many friends have called and stopped by to pray with us and do simple things such as watch a ball game with us. Our parents have been a vital role, from keeping our dogs to watching Riley overnight.
I started a blog to help keep family and friends stay up to date and it has been very encouraging. With social networking today, the blog has spread to over 12 countries and people from around the U.S. have contacted us about similar situations or just to give us support/prayer. (www.jordansheart.wordpress.com)
What advice would you give to other parents that may one day face having a sick child?
Neil: The only advice I can truly recommend is to keep your foundation intact. Our foundation has been our belief in God’s plan. By realizing the eternal blessing we are receiving from Jordan, it allows us to cope and stay mentally fresh. I don’t know why we are going through this, but I know the same God that is allowing it to happen is also the same God that has given us our second daughter, Jordan Grace. By believing in this foundation we haven’t spent time questioning God or arguing amongst ourselves. Together we have been able to stay levelheaded, because we can look at the big picture during difficult moments. The only choice someone has in this type of situation is to take one obstacle at a time.
Kristi, as Mother’s Day approaches, what are you thankful for?
Kristi: I am so thankful to have a wonderful, supportive husband who has been my rock through all of this. He is such a strong spiritual leader for our family and the most amazing dad for our girls. I am thankful to have two beautiful daughters. I am so proud to be the wife and mother of these three people that God has blessed me with.
As a family we want to say how truly blessed we are to have such wonderful, supportive family, friends, church family and colleagues and even complete strangers. We would not have made it this far without all of the love and prayers that we have received.