TTTS Parent Stories: Ethan David and Owen John Hankenhof
Our beloved baby boys...
“ Kaupili Keiki Kanes ”
“ Babies are the flowers of this world. No matter how long or short they bloom,
their beauty and innocence remain within the heart and mind for all time.”
Although it has taken me a year to put this into words, I dedicate this to my loving husband John, children Paige, Lauren and Austin and all our family members especially Dave and Nancy, Aunt Tricia, and my dad who showed me the true meaning of love, courage and hope. Dr.Marcotte, Dr.Broast and their staff, Dr.Delia for his insite on TTTS and. my TTTS friends especially Trudi who gave me the courage to walk through this incredible journey with hope, fears, love and tears, and especially God for blessing me with all of you.....
My name is Chrissie and I live in Toledo, Ohio. I have 3 children Paige 13, Lauren 11, and Austin 9 from a previous marriage. My journey began In January of 2002. When I found out I was pregnant. I had been with John for 5 years, and we were not married. This pregnancy was not planned, yet it was very welcomed. We were so excited, especially when I went to the doctors in February and they said “congratulations you are having twins”I scheduled my next visit and left on cloud nine. We were so excited. and told our families and friends, made wedding plans and bought every book we could on twin pregnancy.
Through all of this I was not feeling well, my back hurt, I was always nauseated, I couldn’t sleep and I was getting so big so fast. We all just thought it was because I was having twins including my doctor. Because of my age and the twin pregnancy, they wanted me to see a high risk doctor. The appointment was not for a month. When we went to the doctors on March 18th, we were so excited and our only concern was, did we want an amnio, and if they could tell us the sex of the babies. Everyone was so nice there, Dr. Marcotte came in and talked to us about the pregnancy, I could see concern in his eyes when he measured me and I told him how I was feeling. He suggested we do an ultra sound right away to see how the babies looked. During the ultra sound he found one of the babies right away and said it was a boy the other one he couldn’t find as easy. We were so excited John had never seen an ultra sound before and this was the first glimpse of his children. The doctor told us he wanted to talk to us in his office. As we waited for him. I told John something must be wrong I could just feel it.
When Dr. Marcotte came in he said he had some bad news for us. He said all of my symptoms were classic of a condition called TTTS. Twin to Twin Transfusion. He said I was 17 wks and measured 30. The excess fluid was being produced by one of the twins, and the other was doing all the work. One of the twins had no fluid around it and the other had triple the amount. He said at my stage of the pregnancy when it is found, it is the most severe and has a 70% to 100% mortality rate. We were devastated. He said he knew little about this condition but the out look was not good. I would probably go into premature labor and loose them, He could continue to see me and hope for the best. We scheduled a visit for 1wk later. He also said he had the name of a Dr. in Milwaukee who specialized in this condition and if we wanted we could contact him as well. He told us how sorry he was and if we needed anything or had any questions to call him anytime. We left his office in shock. A simple office visit turned into a nightmare. We cried all the way home. We just held each other and asked why?
As soon as we got home John got on the computer and contacted The TTTS foundation and E-mailed Dr Delia. He was up all night looking up web sites and was devastated at what he read. We both cried out to god and prayed. I got down on my knees and pleaded with god to spare us and asked for a miracle. The next day we told John’s parents so they could pass it on to his family and have them pray. I then called my Aunt who lives in town, (my mom passed away 10 years ago and I asked my aunt to stand up for me at my wedding since my mom was gone) so she could have my family pray as well. I did not call my dad because my step mom had just passed away in Oct. and I did not want him to worry until we knew more. I also had to take a leave of absence from work because they wanted me on bed rest.
The next day Dr.Delia called and talked to John. He told us about our options, what to watch for and the benefits of putting me on a high protein diet, protein drinks and horizontal rest. He told us what to ask at the next doctor appointment as and continued to call or email on a daily basis. I continued to get more and more uncomfortable and I was getting bigger as well. At the next Doctors appointment they did an ultra sound and there was a little more fluid around the stuck twin and even more around the recipient. Dr. Marcotte said he felt if we didn’t do an amnio reduction I would go into premature labor from the pressure on the cervix. We asked him to call Dr. Delia and they talked and he agreed. I had my first reduction and they took out 1.5 litres of fluid. I felt so much better. I was told to watch out for premature labor signs and to take it easy.
The next few days were good and when we went back for an ultra sound there was more fluid around the stuck twin and they both were moving all over the place. We were all so excited. He asked if we wanted to know the sex of the other twin and we said yes! It was another boy. We were expecting Identical twin boys. He told us to take it easy and come back in a few days. On the way home we decided to name the boys. Since they were twin boys we wanted both to have a part of Johns name(John David) so we named our donor twin Owen David and the recipient Ethan John. We called everyone including Dr.Delia and gave them our good news. The twins were kicking and we all could feel them! I will never forget the look on John’s face when he felt them move for the first time. We continued to pray but unfortunately our happiness was short lived, I regained all the fluid they had drained and was very uncomfortable. At the next visit I had to have another reduction, they were very painful but I didn’t care at this point I would have a million of them if it helped. The boys still looked good and I continued to have reductions every other day but the fluid was accumulating at an alarming rate and Dr. Marcotte was very concerned., especially because each time I had a reduction I was putting stress on the cervix and running the risk of pre term labor. Our goal was to get me to at least 26 weeks. And if necessary they could deliver them and they would have a chance. By now I had told my Dad and everyone else. Everyone was bringing over meals, praying, helping with the kids etc. I was on complete bed rest so John was doing everything taking care of me the kids the house etc, he was wonderful. Each night when I went to bed, I begged God for a miracle and prayed I would not go into an early labor. Unfortunately at 23 weeks after 10 reductions the stress was effecting our recipient twin Ethan, he had signs of hydrops around his stomach and was showing the beginning signs of heart failure. We were crushed..Dr. Marcotte said at this point things were not looking good, he could continue to do what he was doing and suggested we also consult with Dr. Delia and see if I was a candidate for the laser surgery that could be our only hope. We did and we all felt this was our only hope.
The next day we drove to Milwaukee to meet with Dr. Delia and have the surgery. At the hospital we were so excited. I was prepped for surgery and after an exam, Dr. Delia said he was so sorry but he could not perform the surgery because of the location of the placenta with out risk to myself and the boys. We were all crying and left the hospital in tears. We cried all the way back to Toledo. The next day we met with Dr. Marcotte and he said that Ethan’s condition was getting worse and there was not anything else they could do except wait and see. We continued with a few more reductions but by 26 weeks both boys had signs of hydrops and beginning heart failure.
I was rushed into an emergency c-section at 26wks and 6 days and told they had a 50/50 chance.
On may 7th 2002 at 11:26 Ethan David was born Alive! at 1.15 lbs and 13 inches. Owen John was born next at 1.06 lbs and 12 inches. They were perfect!! But so tiny!!!! We were able to see them and touch them in the NICU. When we put our finger in their hand and they wrapped their tiny hand around our finger it was something we will never forget. Because of the stress on their little bodies from this awful illness TTTS we lost Ethan David 23 hours later 0n May 8th, and Owen John 48 hours later on May 9th. We were able to hold both boys and kiss them and say goodbye. My aunt Tricia was with us as well as Dave and Nancy the boys grand parents so they were also able to see them and say goodbye. The hospital had dressed them in beautiful outfits with matching blankets And took pictures for us. I will always remember the feel of their little warm bodies against my cheek. I had carried them inside me for so long, I was so sad, part of my heart went with them when I said goodbye. We had a beautiful funeral that John’s parents put together with my family on May 12th. John’s mom Nancy, Paige, Lauren and Austin all spoke at the funeral and it was truly beautiful. The boys were buried in the same little coffin together. Our little boys are now angels looking over us from heaven.
First Anniversary Tribute to Ethan &Owen
To our beloved baby boys,
Ethan David Hankenhof 7th May 2002- 8th May 2002
Owen John Hankenhof 7th May 2002 –9th May 2002
It has been one year since you came and went so quickly. It is hard to believe. Your dad & I miss you so very much. We talk about all our hopes and dreams we had for you all the time. We also talk about your incredible fight against TTTS. You gave all you could, as did we, until God called you home. We will forever hold your journey and memory in our hearts.
Every time we see a baby boy, around the age you would be today, we are overcome with grief. Some people don’t understand, it has been a year and they think we have forgotten or should be over it by now. Let them walk in our shoes and carry the grief and sorrow we do. We never heard about TTTS until we went through it with you, and our hearts go out to all the families who have shared this loss too!
Your brother and sisters write about you in their journals,
Your grandparents talk to you in their dreams,
Your father and I live our life through you
And forever in our hopes and dreams.
One day we will be together again in heaven. Until then, we will be with you daily in our prayers and our thoughts, because a little piece of you will forever be in our hearts.
Love to you our baby boys, Let god keep you in his care.
Until we see you once again, may you watch over us up there….
Love to you our Angels
Mommy DaddyPaige, Lauren and Austin.
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