One month later...

So, the funeral is over, and our new "normal" begins. What is "normal" anyway? What I realized that year is that life would never be the same. Adjusting to that new "normal" was very difficult. This journal entry reflects life about one month after London died. Jonathan and I returned to work after 5 weeks, and began facing people and situations for the first time since her death. Also, I had emailed London's surgeon about her autopsy, and he replied by explaining what they had found and what they had learned from our baby's condition. It was so very important to me - especially then - that something would be learned from London's case. I needed to know that her death was not in vain...that she wasn't just another HLHS patient who was gone. I did find comfort in Dr. Manning's email. I have attached our communication - which is included in my journal entry. I have chosen not to modify my journal entries, mainly because I want to share my raw feelings from that time.



October 15, 2007 (Monday)
This was my and Jonathan’s first day back to work. It was a professional development day, so we had to go to separate schools for training. I had a couple of people ask me how my baby was doing. That was the first time I had to answer that, and it was tough. I remained strong while sharing the news, and both individuals felt terrible. I felt bad for them because I know they didn’t want to hurt me. Anyway, again that’s part of all this. I also was aware that people at our school had been given advice on how to treat us when we came back. Many felt that they didn’t need to say anything to us so that we would not be hurt. I shared the following email with our staff so that they would know how we wanted to be treated, regardless of the advice that they had been given.

Everyone,
I just want to say that Jonathan and I truly appreciate all the cards, flowers, phone calls, hugs, etc. that all of you have given to us. We are looking forward to getting back into our normal routine after fall break and getting to spend our day with you all. I am not aware of the advice that you have been given regarding our return, but if I could simply say a few things from my heart. First of all, feel free to ask us how we're doing. Feel free to tell us what you thought about our beautiful daughter. My biggest fear is that her precious, yet short life will be forgotten. As her mother, I am honored when someone admires her, talks about her, and shares their feelings to me.

Of course, Jonathan and I don't want to sit around and be depressed forever. We don't want to be sad every minute of the day, but we also don't want you to feel that you can't mention it or acknowledge it. This is a huge, defining experience in our lives that does not have to be ignored, and we don't want it to be ignored. In other words, don't feel that you have to ignore it in order to "help" us. London is on our minds all the time, and knowing that she might be on your mind at some point shows us that she is being thought of and remembered.

I just wanted to share that. Again, thanks to all of you for everything you've done during the past 5 months. We love you all and are so proud to be a part of such a wonderful work family.

Love,
Ashlee and Jonathan


That night, I also decided to email Dr. Manning. I just felt this need to know what was found during London’s autopsy. Here is the email that I sent to Dr. Manning:

Hello Dr. Manning,
It's been nearly 5 weeks since my precious daughter, London Cloe Tomes, passed away at CCHMC. I don't know if you remember, but she did not survive the Norwood procedure on Sept. 13. Just to help with my closure, I was wondering if you have studied her echocardiograms to see if there was evidence of the 2 unknown blood vessels on her pulmonary artery. I understand that even if we had known about them, you wouldn't have even been able to attempt her surgery. However, as her grieving mother, I just want information on the knowledge that you have possibly gained through London. It is comforting to know that in the midst of my grief and sadness, that hopefully London was a pioneer for future HLHS patients with the same complication. I would greatly appreciate your reply, even if you have not studied her case. Thank you again for doing everything in your power to give her a chance at life.

Sincerely,
Ashlee Tomes

October 16, 2007 (Tuesday)
This was our first day back at school in our classrooms. All of the students in the school were previously made aware that London had died so that they would be prepared when we came back. Many students gave me hugs and said they were sorry that my baby died. Truthfully, all the students were so sweet and none were inappropriate about the situation. Some of my little ones said things like, “I’m sorry your baby died” or “Why did your baby die?” However, I didn’t have anyone ask how my baby was doing. They were all very respectful of the situation, even the youngest students.

I had a good day until my planning at 12:00. Thankfully, my substitute Pam Copelin had planned for my returning week so I wouldn’t have to worry about that. Unfortunately, that meant that I had nothing to do during my planning, so I began focusing on London. As I read so many sweet emails and thought about the last 5 weeks, I just couldn’t help from becoming emotional. Then, I noticed an email from Peter Manning, London’s surgeon. He replied to my email that I sent the night before. Here is what he said…

Dear Ashlee,

I certainly remember London. She and you have been in my prayers. I was able to view the dissection of the heart during the autopsy which greatly helped our pathology colleagues understand the anatomy we had discovered in the operating room. I also had the chance to scour the medical literature to try to identify if a similar abnormality associated with HLHS has been previously seen by anyone. The cardiologists who read her echos also went back and reviewed them after learning what we found in the OR, and our Heart Center team discussed all of this information at our most recent complications conference a week ago.

The examination of the heart confirmed what we suspected in the operating room. The two small arteries that arose from the back of her left pulmonary artery were in fact the two main coronaries supplying the left side of her heart (which includes much of her right ventricle as well). There were no other branches arising from a normal position on the aorta that supplied the same zones of the heart. I have found reports of a few other cases of similar anatomy, though in all these cases it seemed like the anomalous coronary arose as a single trunk, rather than two separate vessels, and all the cases I found described the anomalous coronary arising from the right pulmonary artery, none from the left as in London's case.

Repeated review of the two echocardiograms she had preoperatively do not identify the anomalous coronary arteries, and in fact show an artery which looks exactly like a normal left coronary arising from a normal position on the aorta, a finding which is hard to understand and quite frustrating. In our discussions about this anatomy, we recognize that if such an anomaly had been identified preoperatively there may have been a different variation we could have been employed for our reconstruction, or we may have recommended considering transplantation as an alternative to staged reconstruction. I don't recall that any of the other patients I found in the medical literature with similar anatomy survived a reconstruction attempt.

This is certainly a case that we learned a great deal about, and I am confident that this knowledge will be able to be applied to enable us to better care for such complex cases in the future.

I hope this information helps bring some closure for you. London was a precious child who was deeply loved. Please let me know if I can help in any other way.

Sincerely,

Peter Manning


His email was so detailed and informative, so I appreciated that, but it also was a reminder of my loss. That added to my emotional day. This was my final reply to his email:

Dear Dr. Manning,

Thank you so much for taking the time to give such a thorough explanation of what you have found in London's case. It is so ironic and somewhat surreal to me that London's case seemed so "textbook" and "standard" to everyone, yet in the end, it was something that no one has ever seen. However, I find comfort in knowing that you and your team have carefully examined her case, and that London is definitely a pioneer for future HLHS patients with the same or similar complication. Although research and medical advances for HLHS have already come so far, I see that there is still so much more to learn.

I imagine that this is not a fun part of your job. However, you have proven through your sympathy and kindness in the waiting room that night and in your email that you are a man of character who cares about your patients, their well being, and their families. Thank you for praying for us and for keeping London "alive" through the research and knowledge that has been gained because of her. I will also continue to pray for you, just as I did every day prior to London's surgery. I pray that God will guide your hands as you transform little hearts, and that He will give you the strength, courage, peace, and perseverance to do the amazing job He has blessed you with. I can only imagine the lives that have been touched and forever changed because of you and your team. Although my life has been forever changed in an unfortunate way, I know without a doubt, that she was in the best care possible, and I have peace because of that.

You and your entire staff were so kind, positive, encouraging and professional to me and my family. I pray that I never have to come back to CCHMC, but I will never forget how wonderful everyone was during our 5 month journey. Thank you again, Dr. Manning, for going above and beyond to care for London and to help bring some closure to one aspect of our grief. Take care and God bless you.

Sincerely,

Ashlee Tomes


I chose to look at her pictures that Alaena had emailed to everyone the day after she was born. The title of the email was “London is here!!” It was full of excitement, anticipation, and hope. To know that London was not here any more was just so hurtful.

Once I became upset and submerged in my grief, I also wanted to view the video of London that Kyle had produced and emailed everyone the day of her surgery. I had not received it through email, so I had Mom to send it to me. I sat here at my computer and wept as I watched it. The background music was so pretty, and just seeing her daddy hold her, her little hand stretch out, and her chubby cheeks just lying so peacefully, I just ached for her. The video was taken approximately one hour before her surgery. Kyle had emailed it during her surgery, before we knew that she did not make it through. I will forever be grateful that Kyle took the time and effort to create that for us.

The rest of the day was very difficult for me. I just couldn’t get it together, and I think it was very hard that life was back to “normal”, yet our normal was so “not normal”. This just wasn’t the plan! I thought London would be home by now. As one girl on the blog that I previously mentioned said, it’s as if someone pushed the rewind button on my life, and I’m back where I was a year ago. This is so hard.