I remember laying on the patient chair/bed at the fetal care center having an ultrasound while having a fun conversation with Dr. Magee, explaining to him why my doctor sent me over to see him. He said "it's a cyst?" I said "yes, they say a cyst near the baby's abdomen." He responded, "I can't see a cyst." And we talked some more he paused, "the heart is near the middle of the chest." He kept moving the ultrasound wand over more, I then just see this black mass, it looked liked it was rolled into a wheel. He stopped turns to me and says ," Im sorry Megan this isn't good." All the fun stopped, I was in shock. My mom was with me as Paul was in a conference that day. He told me what the baby had "It's a Diaphragmatic hernia." I responded.....a what?" He told me what is was. I could only take bits and pieces of what he was saying....bowels in the chest......leaving the lung.....UNDEVELOPED." He then took us over to see the fetal cardiologist. I remember walking in and crying to Dr. Eapen, "IS MY BABY GOING TO DIE." She calmly responded "NO!"She then did the ultrasound and could see some blood flowing into the left lung that was underdeveloped which was a positive sign......thus started this CDH Journey.
We were so prepared about everything that Matilda was about to experience, but no one prepared us for the emotional hangover we were going to have.Grief, Guilt, Trauma, is very real.
I will never forgot that day in Dr. Magee's office, the way I found out, one minute on top of the world, the next complete bottom. Telling you your child may not make it - that shock stays with you.....the emotional tsunami you endure. And then when she came out of the hospital was the best day.......but the flashbacks of those moments when it was so dark. Feeling guilty because how did we get to be so lucky.....why had others had to suffer a loss.
When we saw the surgeon for a f/u and he told us about a baby he did surgery on recently. Once they did the surgery pulled everything back together, there wasn't enough lung for that baby to survive. Again how did we get so lucky....how is that family coping?
I can remember going back to work after my maternity leave was up. I can remember just blanking for the day - reliving this blog, looking at the CDH fb page - "please pray for this baby -they lost their battle with CDH today."
I would get so sad for the family and again the guilt - the grief.
Fast forward to a year in a half later - The NICU that we were in, I work at the same hospital. I had previously said if another family come through to please tell me, I would love to help them.
I ran into the NICU director who I actually never run into, so the stars aligned. "Did you get my message?" I have a family that will be delivering in two months and I was wondering if you wouldn't mind helping. I said absolutely!! The mom got in contact with me. We arranged to meet. I just wanted to hug her as she had it written all over her face, fear of the unknown. We kept in touch through text and met a couple of more times.
The mom delivered and the baby was doing great - had surgery three days later. The mom got in touch with me and asked me to come and meet this little superhero. I was so touched, I got to meet this little miracle that months earlier you couldn't really joyfully talk about. The mom was doing very well too, which made me so happy. I felt rewarded for helping someone go through this rollercoaster. another week later and this little miracle GOT TO GO HOME. I was so excited for this family. Only had to be away from their little angel 2 1/2 weeks. And what a little fighter, surpassing so many odds. the day came when they were going home. They invited me up, I was really excited to congratulate this miracle. The mom said come up we are in D.........I thought wait D is where Matilda was when she was first born. I got up there and it was such an amazing feeling. Going back to the place where our CDH journey began....and where this babies journey is ending. I spoke with the family so excited and reliving the months before and how far they had come. I congratulated this little champ....gave them hugs and walked out. As I walked out......I had this great sense of gratitude and happiness for this family...."they did it" they survived".........wait I survived. It was the first time I felt healed from my whole CDH journey. As I walked down that hallway on the way out like the many times before......I felt for the first time, I walked out a survivor. I am now able to help other people get through one of the hardest times in their lives. And that is a calling for me.
Funny enough I had an interview with a nationwide NICU program the same day. Where I will be mentoring other parents. The interviewer asked about what grief and anger is to me.....about having your pregnancy experience taken from you. "I said well you can be angry that you didn't have that baby next to you after she was born. Be angry that she didn't come home with you. Or angry that you had to go to the NICU every day for six weeks to see her. Or you can be happy that that little girl is sitting in front of you, Feel lucky that you can brush her hair. Not feel angry that she is a little spit fire because she defied the odds to be with you. Because in the end we all survived.
