Monday, January 25, 2010
“The initial news” (This is slightly revised version of my speech that I gave twice at the U of U)
We found out our baby had a problem about 17 weeks, they told us that they could not see his brain stem and that we needed to see a specialist. We found out on January 26, 2009 at the University hospital that our son Tyson Thomas had Mylomeningocele spina bifida L5-S2 region. We were pretty devasted. We were sent home with pamplets and books of everything that comes along with spina bifida. Every parent wants to hear that their child is perfect. I felt like my life was turned upside down. I wondered why me? I wonder how I would handle this and cope. We were briefly mentioned about the MOM’s study that day by Dr. Eric Clark. She told us that their were risks involved but it was an option. We immediately said no, It was not something we wanted to do. We were later mentioned about it very briefly by the genetic counselors. At that time we did not feel it was something we wanted to do. About a week later it was mentioned again about the study by Paula Peterson the Spina bifida clinic coordinator. After finding more about spina bifida I knew that I wanted to do everything possible to give him the best life possible. I feel that we were meant to be part of the MOMs study and it is what heavenly father wanted us to do. He was guiding us. The three people who mentioned the study actual didn't hardly anything about it. I think it is incredible that it was mentioned to us. I have even talked to moms since Tyson who had the same doctors and go to same place and were not mentioned about the study. We are the second family in Utah to have fetal surgery as part of the MOMS study. The first family is O'brian's, they are amazing. I also feel we were guided to them. If we had not had the opportunituy to meet them I don't think we would have chose to enroll. I did lot of research about the MOMS study. They have a website, click on link http://www.spinabifidamoms.com/. It has videos and all the information about the study. After researching I felt that it was something that I wanted to do so I could tell Tyson when he was older that I did everything I could for him to have the best life possible. I felt that if I did not look more into it, I would regret it for the rest of life. My husband was unsure and nervous about the risks and did not want him to be worse off.
We had an amniocentesis (“not a fun experience”) just in case we decided to go forth. We met the 5 things to qualify. My husband and I had 2 conference calls with Jessica Ratay the moms study coordinator. You have to have these calls to decide if you want to fly out for an evaluation. You discuss, every aspect of spina bifida, risks of the surgery, the possible benefits of pre-natal surgery and every detail of the MOMS study. I think each phone call was at least and hour. My husband was still unsure but decided to satisfy me and fly to UCSF, San Francisco for and evaluation. I packed my bags for 4 months not knowing if I was going to enroll. I had four huge suitcases.
The first day you meet with about twenty different doctors, urologists, neonatologist, perinatologist, anesthesiologists, radiologist, spina bifida coordinator who each explain their part in the study and the possibly risks if you were to randomize to fetal surgery. They all remain completely neutral and do not persuade you to do it. They want it to be completely your decision.
The second day you have an ultrasound as well as fetal echo to make sure you still qualify for the surgery. The end of the second day we were still undecided if we were going to be apart of the study. My husband and I were still very nervous about the risks. We did not want him to be worse off. It was extremely overwhelming deciding if were making the right decision. On the third day you have a MRI of the babies spine and head. This is a lot more in detail than a normal ultrasound. We were supposed to have our decision as to enroll or not when we got back for the MRI. The MRI was at another facility. My husband said he did not want to do it but if I felt it was the right decision he would support me. I decided that we would just fly back home and do the normal standard of care because I was scared. I did'nt feel like it was what heavenly father wanted us to do if we both did'nt feel right about. We rehearsed what we were going to tell them that it just was not right for us. When we got back to UCSF and walked in the fetal treatment center the study nurse Tamara says Dr. Farmer who is the first women fetal surgeon in the U.S. would like to talk to you, she has meeting’s all day but she is going to step out for a few minutes to talk to you before you make your decision. I immediately knew it was more bad news. By this point I could sense the awful feeling when you know more sadness is about to come. It seemed like a series of bad news for us. It seemed like every time we would see a doctor for months all we received was bad news. We went for a walk to her office. Dr Farmer said I want to talk to you about your babies MRI results before you make your decision. Dr. Farmer preceded to tell us that Tyson Arnold Charii II malformation was very significant and her and the radiologist both agreed that it was the worse they had ever seen. Dr. Farmer said she had been practicing for a long time and it was by far the most severe. His brain was being pulled back in the c4 region of his vertebrae. It was being pulled clear in his neck. We asked her what this meant for him, She said he will likely not eat or breath on his own because it affects those muscles. She told no matter what we chose she wouldn’t think less of us. She said if we chose not too she would call our doctor and the U of U and tell them the findings of MRI, so they could be prepared if he needed to be intubated. Dr. Farmer said in 6 years of being part of the study she had never shared her opinion and tried to remain completely neutral. But she felt this is the exact case they could help. She said that it was completely up to us. She also assured us that we may not receive pre-surgery and may get post-natal. Because you are randomized and have a 50/50 chance of getting pre-natal or post-natal. My husband said I will be honest we had decided not to do the surgery but I think this might change things. We asked if we could have more time to talk things over. It was about noon. They said we would have to randomized by 2:00 PM in case we randomized to pre-natal surgery. We walked outside stood in the back of UCSF looking over San Francisco and cried. We prayed, we needed an answer immediately and felt completely lost. We did want him to be born early and have more problems. After many tears we decided it was what we wanted to do. Jared actually said first I think we should do it and so I nervously agreed. I told him that I had a strong feeling that we would be randomizing to fetal surgery. They ask you to please make sure it is what you want to do because it hurts their study if you pull out after you have been randomized. We agreed we wanted to do it. You set in conference room they print out the paper and it said pre-natal surgery group. We were admitted that night for surgery the next morning.
Warning the pictures are Bit Gruesome to some. Skip if you don't want to view.
This my uterus and Tyson Back and the patch to close the hole. My sweet nurse Rachel took these pictures for me.
More of uterus and babyThe whole team and microscope
We called our family and my mom immediately boarded the plane to be with me. I didn't sleep all night. I was very nervous about the surgery. In the morning I will never forget being wheeled down to the OR. My sweet husband was shedding tears. I have hardly ever seen him cry. It was so special for me to see his concern for us. I felt an over whelming calmness. I know heavenly father was there with us that day. (There is actually a picture of a famous painting with a group of surgeons operating on a person with god in the background guiding them. When I am rich, I want to purchase this.) All we could do was rely on our faith in god. We had to put our complete trust in him. We had surgery at 25 weeks and 3 days. Tyson weighed 1lb.s 13oz. They cut me horizontal hip to hip. They gave him medication for pain because they are not sure if babies at this gestation age can feel pain. They use a giant microscope to release the nerves that are attached to the skin, put them back in the hole and closed it. They have a particular person bathing him in fake amniotic solution, which is just a warm saline the entire operation. In my case this was Dr. Rand. They used a fake skin patch to cover Tyson’s back because of shape of his lesion they were not able to close the hole with his own skin. I had an epidural and anesthesia and was completely out. Tyson's heart rate dropped for a few seconds, it made them nervous. They gave him epinephrine or something like that. It jumped back up. They think maybe the cord got compressed for a minute.
After the surgery, I was on magnesium sulfate for 3 days to make sure I did not contract after irritating my uterus. I don’t remember much except I felt like I had been run over by a car and was in a lot of pain. I couldn’t move an entire muscle in my body. Every movement Tyson made was extremely painful on my incision. I was in the hospital for about 7 days then sent to The Family House which is basically hospital housing. I was on strict bed rest. I could not walk at all and had a wheelchair.. I was in a wheelchair for 10 weeks following surgery so I did not go into labor. I was on 10mg nipedipine every 4 hours around the clock to keep me from contracting, and vicadin for pain. This made my BP really low. I could write a whole book of the ups and downs after surgery but because this is his story we will just keeep it short.
You are required to have support person with you at all times. My husband did not have any vacation because he had just stared a new job. He went home to work and care for our 3 year old daughter. He would fly back and forth with my little girl to see me on weekends. I was fortunate enough to have mom, grandma, dad, sister-in-law, in-laws, and brother as support people. They each took two week increment, without them it would have not been possible for me to be part of the study. They joked all along I was going to deliver with my brother who I had not seen in a couple of years, which I did. I had a lot of fun with each person who came out to support me.
I had an ultrasound, BPP, and doctor appointment every week. The average baby is born 8 weeks after surgery. They are all pretty early when I enrolled there were only two other's who made it past 35 weeks. Every thing went pretty smooth unit 32 weeks, 7 weeks after surgery. I went in to my weekly appointment and amniotic fluid measure a 4.2 and it had always been at least a 12. They baby wasn’t growing as much. They checked my membranes they were intact. They thought my placenta was pooping out, a placental insufficiency. Because my fluid was low, they were worried about a cord compression so I was admitted to the hospital so they could monitor me closely. I was there for 11 days. On the 11 day, the day after my brother arrived my fluid magically appeared to a 6.4. I was able to be discharged to the family house. I had two fun days with my brother and then went in Monday for a check-up and my fluid was a 2. I was admitted to the hospital again. I started contracting that night and they could not stop the contractions with nipedepine. The doctors came in that morning and said that at this point it was safer for me and the baby if he was born. I had a total of 55 ultrasounds. I really don't care to ever have one again. They were extremely painful on my incision and usually didn't bring great news.
I called my brother to come to the hospital and about ½ hour later by emergency c-section !10 weeks after surgery, Tyson Jared Thomas was born on May 5 at 35 weeks completely healthy. He weighed 4lb.s 3oz. His APGARS were 9, & 10. He did not need oxygen or anything to help him breath. He ate on his own. My brother was with me, Jared got on a plane and flew out as soon as he heard the news. He was in NICU for 2 weeks, to see his back heal before he could lay flat to fly home on airplane. When he was one week old he had another MRI. His MRI report read no herniation of cerebral content below the forum magnum. His brain malformation completely reversed. He has lots of leg movement the doctors at primary are very positive he will walk and that he will likely not need any devices to help him walk. They say that the surgery does not help with the nerve damage but I truly believe it does. Over the years, doctors have noticed that nerve function in babies with spina bifida seems to worsen throughout pregnancy. Often movement in the legs and feet which can be seen by sonogram early on is not seen later in the pregnancy. This suggests that there is ongoing damage to the open portion of the spinal cord, possibly from contact with amniotic fluid. In addition, both animal and human studies have shown that the ability of the body to repair damaged nervous tissue is best in young individuals. The day before Ty was born.
A couple of days old
Ty's back the day he was born. I was suprised that it was not more healed over. It took about 4 months for this to heal over.
Tyson is almost 9 months and has no shunt. The chances are likely that he will never need one. He has lots of leg movement and we are very optimistic that he will walk one day. He is sitting and hopefully crawling soon. He does have a neurogenic bladder which we catheter him twice a day for now. It may increase with time. His brain is slightly different from yours and mine. This is from when it was developing with the Charii Malformation. As of now it does not seem to be affecting him. Time will tell. He is completely normal to us. The surgery was very successful for us. The staff at UCSf became my family their really isn't a day I don't think about San Fran and our experience. I once feared and felt total darkness. I am now experiencing the greatest love and joy I have ever felt. Tyson has surprised us and a lot of people. He is truly a miracle and I know that without the gospel, Heavenly father and the love and support of family and many, many prayers in our behalf he would not be what he is today.
2 weeks ago