Pregnancy and Infant Loss Awareness Month - Miracle Dan

“An Angel in the book of life wrote down our baby’s birth and whispered as she closed the book ‘Too Beautiful for Earth"

It was our 20 week ultrasound with our first baby, and we had just found out that our 70% chance girl had turned into a boy! My husband says he knew all along it was a boy! The ultrasound tech continued her scan and we calmed down a bit with the shocking news that “she” was now a “he”. 

The tech suddenly grew quiet as she was scanning our baby’s heart. She took many pictures, and then told us she would be back in a few minutes. She left the room and I immediately knew something was up. I cried and expected the worst, but that still didn’t prepare me. The tech came back with the radiologist and he told us our baby had a complicated heart defect. He then recommended we continue our care with Primary Children’s Medical Center and University of Utah Hospital. After a fetal echocardiogram, our baby boy was diagnosed with Heterotaxy syndrome- a rare birth defect that involves multiple heart defects, as well as organ anomalies. 

I ended up having a pretty complicated pregnancy.  I was diagnosed with a blood platelet disorder and had high blood pressure, too. We had LOTS of appointments!! We met with cardiologists several times throughout the pregnancy and we decided that after birth we would go forward with surgery to try and save our baby boy.  

Of course when my water broke my Dr. was out of town!  Baby boy decided he was going to come a little early at 38 weeks and 5 days. After doing some blood work at the hospital we learned that my blood platelets were too low and I was unable to have an epideral … (insert swear words!) 36 hours later, yes THIRTY-SIX hours later, Daniel Mark Jones arrived!! 5 lbs 4 oz and SO MUCH brown hair! I didn’t see him, as he was not breathing and was taken right away to get stabilized. Shortly after I was placed to rest in a recovery room, a nurse and cardiologist came in to talk to us.  I was completely exhausted and seeing double. They told us that Dan’s heart defects were more extensive than they had originally diagnosed, and that surgery was no longer an option. He had been placed on life support and they didn’t think he had much time left. My heart was broken. I hadn’t even seen or even HELD my baby yet. They wouldn’t let me get up and walk, I had to wait to be wheeled in my hospital bed from the U of U to PCMCMy husband, Tyler, rushed over with our cardiologist, and they gave him a name and a blessing. 

I held my baby boy for the first time and I felt so much peace. I cried tears of sadness, happiness, frustration and love. 

I was SO IN LOVE! I knew being a mom is what I was meant to do. We called our family and told them they needed to come to the hospital and say goodbye.  After we took Dan off of the machines the doctors said he would probably last about 5 minutes. We took him off the life support and we were able to get some pictures of Dan with “Now I Lay Me Down To Sleep” an organization that provides photography for parents suffering the loss of a baby.  After our little photo shoot, Dan was still with us! It had been over an hour.

The next morning came and the doctors were shocked that Dan was still with us. They recommended comfort care at home, but with this recommendation that said he most likely wouldn’t make the drive home. After another night stay in the hospital, we made it home! Dan was still with us! 

Dan was set up with hospice care and a nurse came to our home every day. His oxygen levels were in the 80’s but he never seemed to struggle to breath. We were so confused. He was eating his bottle, peeing and pooping just like any baby! He even peed on his Dad on more than one occasionAfter 2 weeks of having Dan with us, we took him back to Primary Children’s to be sure there was nothing else they could do. They attempted a catheterization procedure and balloon valvuloplasty to try and widen a pulmonary artery to get him better oxygen flow, but it was unsuccessful. Again, they told us he probably wouldn’t recover from this procedure, but Miracle Dan was a fighter!! We took him home and enjoyed his wonderful company for THREE MORE WEEKS! 

Dan was such beautiful baby. I know I’m his mom, but REALLY! He never cried. He was perfect!  I have never felt the spirit so strong as I did when I held that sweet baby boy. During that time, we had a 1 week “Hawaiian Luau” birthday party, we celebrated Easter, and he even went camping in the basement! Dan had visitors every day. He was and IS a loved little boy that touched many. 

Dan was with us for 5 weeks. He was a miracle baby. He struggled on his last day so we gave him morphine and took him for a walk. We knew the time was coming so we called our family to come over and say goodbye.  He was held, kissed and loved on by all our family. On May 19, 2011, I placed Dan in his swing and seconds later he took his last breath. Surrounded by our loved ones, we held our baby and cried. 

I cherish every memory and every picture. During his time with us we had such amazing support from our family and friends. The love and support still continues throughout our loss and it means the world to us! 

I was honored and excited when I was asked to write about my angel baby. I love to share his story! With October being ‘Pregnancy and Infant Loss” Awareness month I wanted to share my thoughts and feelings about losing a child.  But MAN it is hard to write! I have taken so long to write it. (Sorry SidebySide Baby!)  I wish that no one would have to endure this trial! It is hard. I can truly say I know what it feels like to have a broken heart. My heart hurts. I have pain in my heart when I think deeply of my son. There is a hole there that I can’t fill until I see him again in the next life.  

My husband and my testimony in the Gospel of the Church of Jesus Christ of Latter Day Saints have been major helps in my loss.  My husband and I know that we will see our son again. He has been called home to Heaven earlier than I would like right now but I know he is sealed to my family forever. My husband was and is always there when I want to talk about Dan. We have had several milestones lately with our second son, like starting preschool and soccer, and we have wondered what Dan would have been like at this age. 

I am blessed with amazing friends and family that still talk about my baby Dan frequently.  If you have a friend or loved one that has suffered a loss, ask them about their child! Sometimes someone will ask about Dan and I will cry. Other times I don’t. I love him so much but sometimes it is hard to talk about it- even after 4 years.  It is good to know that others think about him and remember him.

 We have celebrated Dan’s birthday every year with a balloon release at the cemetery. One family sends us a birthday card for Dan every year. I hope they know how much it means to me that they think of him! We had some wristbands made that say “Miracle Dan” and there are still many of our friends and family that wear them. Tyler and I never take ours off! People have asked about the “Miracle Dan” bands that friends have been wearing. Some have even had their conversations lead into the Church of Jesus Christ of Latter Day Saints – look at our son doing missionary work! 

Since my loss I have been incredibly blessed with 2 healthy children. Then there’s the “How many kids do you have?” question. That is the hard one for me. I don’t want people to feel sad or uncomfortable when I answer. I have three! I will tell people I have three but that my first child passed away when he was 5 weeks old with a heart defect. “A mother is not defined by the number of children you can see, but by the love she holds in her heart”

I like to include him in our family pictures as well. We talk to our other children about him and tell them that their brother lives in Heaven.  We visit his grave often to decorate for holidays and have picnics there. 

We met with a grief counselor a few times after our loss and that was helpful.  I have also been connected with other moms who have experienced loss through Facebook.  Talking about my loss and sharing his story has helped me feel comfort. Staying active and getting out of the house were also great helps for me- even though those were really hard for a while. There are also a few books I have read that I really liked. I would recommend these to anyone that has lost a child.

“What Happens When People Die?” This book has been great in helping explain to my 3 year old son that he has an older brother that passed away. 


I especially love this quote from President Thomas S. Monson: 
“There are times when we will experience heartbreaking sorrow, when we will grieve, and when we may be tested to our limits. However, such difficulties allow us to change for the better, to rebuild our lives in the way our Heavenly Father teaches us, and to become something different from what we were---- better than we were, more understanding than we were, more empathetic than we were, with stronger testimonies than we had before.” 

You definitely don’t “get over” your loss. It will always be there, but you can learn to get “through” it. I will forever be grateful for the love and support we received during the time we had with Dan and soon after he passed. We had an awesome Bishop and ward, wonderful friends, a family that truly cared for us. A friend took amazing pictures of Dan for us and I look at them daily in our home.  I know my Heavenly Father loves me and knows what I am going through.  I am so grateful for the opportunity to share Dan’s story and I hope that this blog will help spread awareness of infant loss and Congenital Heart Defects!