Go to content; Go to main menu; Go to languages.

Matthew Richard and Emily Corrine

Matthew and Emily, baby with anencephaly

July 18th 2003 – July 21th 2003

Our story really begins in July 2002 when my husband Brian and I went to a fertility doctor after trying to conceive for over a year without any success. It was difficult hearing the doctor say that we had little to no chance conceiving on our own. He explained to us about Invitro and the steps we would have to take in order to get pregnant. After weeks of shots in my stomach and shots on my buttocks the blood work came back that we were ready to be inseminated in November. I remember laying on the gurney praying to God for this to work that I would never ask him for anything else if he would just let this work. After two long weeks I went for my pregnancy test and it cam back positive. We were so happy and I remember thinking how perfect life was going to be now. I was taking my prenatal vitamins, folic acid, eating well and being very careful about everything. The fertility doctor kept very close eyes on me. Every week I would go in for blood work and an ultrasound and on the third week the doctor discovered two heart beats and two sacs – TWINS!!! I remember kissing the ultrasound picture and just imagined my babies and again thanked GOD for this gift. I was going to have the perfect family.

The holidays came and we announced to all of our family and friends that we were pregnant with twins. I could not wait to find out what we were having. In February 2003 I was scheduled for another ultrasound and they said that it was possible to find out the sex of the babies so my husband came with me. We were so excited and kept asking the technician what she saw if she could tell anything yet. She seemed a bit distant and serious and we were joking around. The technician got up and called another technician to look at the ultrasound which I thought immediately strange and asked if everything was okay they said yes that they were just making sure they were seeing everything correctly then they called the on staff doctor in to look at the ultrasound and he too seemed strange. They had me get dressed and wait. An hour had gone by and we were still waiting. I asked the nurse what was going on that we couldn’t really wait much longer because I had already taken a 2 hour lunch and was going to get in trouble at work. She told me that if I had to leave that it was okay and that my primary doctor would call me with the results. I remember when we were leaving I told my husband that something was wrong I could feel it! He told me that I was imagining things that if something was wrong they would never let me leave the hospital. When I got back to work I called my primary doctor and he was actually in surgery and would call me back when he could get the results from the hospital. I could barely sleep that night and I prayed that everything would be okay. The next morning I went to work and again called the doctor. He had gotten the results that morning and explained to me that one of the twins was anencephalic. I had never even heard that word before all I knew was that what followed was the most devastating news I had ever received in my life. The twin with anencephaly would die, I was told chances were the twin would die in utero, would be born dead or would be born alive and live only a few minutes at most. I just began sobbing and didn’t even know what to do. How could God do this to me to my "perfect family" ?? What had I done wrong in my life to be punished like this?? The doctor told me to go to the hospital and meet with neonatologists for additional ultrasound to confirm what the hospital had found and that they would then go through my options. My husband met me at the hospital. The doctor did another ultrasound and confirmed what the other hospital had seen. He told us that the best thing to do was a selective reduction, which is basically injecting the sick baby with saline that will kill him. He didn’t explain to us more options or to think about it. We were in absolute shock and scheduled the procedure for 4 days later. I remember just sobbing and thinking that we were actually going to have to end our baby’s life. My husband was inconsolable we just keeping thinking back at the images on the monitor of the babies and their little hearts beating but we thought that this was something that had to be done to save the other twin’s life or why else would the doctor want to do this procedure.

That Tuesday came and we went to the hospital the nurse brought the babies images up and I just started crying - I asked her what the sex of the sick baby was and she told me it was a boy - our son - our beautiful son - we were never going to hold him or tell him that we loved him. The other baby was a girl - our daughter - she would never know her brother or play with him. All I could think of was how unfair life was. The doctor who was going to perform the procedure came in to speak to us - he could see how distraught we were and he asked if we were sure we wanted to go through with it. I looked at him puzzled and said: “We have a choice?” He then explained that the procedure we were going to do was not without risk, there was a possibility that both babies would abort and that it is quite possible to carry both twins full term but that I would have to know that the anencephalic baby would most likely be born dead or die within minutes of being born and he left us alone to think about what we wanted. My husband and I agreed that it was not up to us to make this decision – who were we to take the life of our son - to not give him a chance - miracles happen everyday - they could be wrong - you hear about these things all the time - why couldn’t it happen for us? We are good people and God does good things for good people.

So we left with both our babies our son and our daughter as long as they were inside of me I would take care of them and make sure they were okay. As my pregnancy continued I had no problems - I ate to my hearts content - and would talk to my babies - my husband would rub my belly and would love to feel them kick - I think for a while we got into denial and believed it would be okay in the end. We picked names Matthew Richard and Emily Corrine. I was scheduled for more and more ultrasounds because they were afraid that Matthew would start carrying to much fluid in his sac but that never happened. With every ultrasound I would ask: "are there any changes?" and the answer was always the same. They were 100% positive that Matthew was anencephalic and that he would not make it. As their due date got closer I began to panic I would cry because of my loss, I was scared as to what the baby was going to look like, I was scared of labor, I just did not know what to expect. I began researching on the internet and found this site and was lucky enough to contact a great woman whose daughter Anouk had also been born with anencephaly - she was kind enough to share her experience with me as well as pictures. This helped me tremendously because I truly had no one else to speak to - no one else could ever understand what I was feeling or the sense of loss I felt.

Matthew and Emily, baby with anencephaly

I was scheduled for a C-section on July 18th - I was 38 weeks pregnant. I made sure all our family and close friends were at the hospital because I wanted them to meet Matthew. My husband was in the operating room with me. We had the priest from our church called because I wanted Matthew baptized immediately. The doctors began the operation and broke my water and pulled Matthew out first he weighed in at 5.10lbs - he did not cry and then they pulled out Emily who was 6.9lbs and cried loud enough for both of them. The nurses quickly cleaned him and put a little cap on his head to hide the deformity and brought him to me and my husband, while they her finishing my procedure. I just remember looking at him and saying hi and telling him I was his mommy and that I loved him and would always love him. The priest and my husband took Matthew into the other room and with the nurses they baptized him and prayed for him. I was not sure if I was going to see him again and wanted to go to him but I couldn’t move until the doctors finished stitching me up. They finally wheeled me to the recovery area and introduced me to Emily and then brought me Matthew. I was holding both my babies and my husband was so touched and was very emotional. After about an hour they wheeled us to our main room and we where greeted by our family and friends.

Everyone was so happy to finally meet these two!! They were hugging them and holding them and kissing them. Everyone wanted to hold Matthew - they embraced him because he was part of our family. The entire time I kept thinking when will he pass on. I was terrified to sleep because I thought we would pass away when I was sleeping. The nurses assured me that they were keeping a very close eye on Matthew and that if they saw he was getting weak they would wake me immediately. The next morning I woke up anxious to see the babies, the nurses brought them in and I got to feed Emily but Matthew only had a few drops. I got to change their diapers and hold them. My husband loved holding them as well and Matthew held his finger so tight like if he knew that was his dad. We cherished every moment with Matthew and our family did too. He touched so many people because no one could believe the fight this baby was putting up to be with his family as long as he could.

On the 20th it was obvious that Matthew was struggling he seemed to be gasping for air and even stopped breathing a few times and we were trying to prepare ourselves for what we knew was going to happen. That night Matthew spent the night in my arms. The nurses did not think he would make it through the night. We let Matthew be in the crib with Emily so that they could be together for the last time then I took him in my arms and just held him close letting him know it was okay that I knew how hard he was struggling and that I thanked God for him and for the honour of being his mother. Brian also held his son close to his heart. Matthew passed away in my arms on July 21st, 2003 at 7am. Nurses came and cried with me and told me how he had touched their hearts and how brave we were to have gone through this. I told them that I wasn’t brave - Matthew was the brave one who fought all the odds and spent three beautiful days with his family. My family took care of the funeral arrangements for me and we buried Matthew on the 25th.

We would not have traded our time with Matthew for anything in the world. He is our son and we think about him everyday. We have his picture in Emily’s room, in our family room, he has a Christmas ornament on our tree and is very much a part of our family. We go visit his grave and put little stuffed animals there, flowers etc.. I kiss his picture and always tell him how much I love him. People don’t always understand your loss - they say things like well you’ll have another son one day. Which is fine but a new baby will not replace Matthew. It will always be a loss for us, when Emily accomplishes something we always think Matthew would have been doing that too, or how big do you think Matthew would have been etc.. I would like to tell you that the hurting goes away but it doesn’t. I still cry when I think of my Matty but I never will regret our decision. I know I will hold Matthew in my arms one day, Matthew will hold Brian’s finger again one day and Emily will one day play with Matthew and our perfect family will be together again.



Written in February 2004


Matthew's website

 

Last updated 11 October 2007