Grubb, Tyler James

[left:088b20e3de]http://www.cherubs-cdh.org/Album/new/grubb-tyler2.jpg[/left:088b20e3de]My son, Tyler, was born three years ago on January 7, 1994. We were totally unprepared for the dramatic experience that came after his birth. My husband, Jim, and I had been married almost seven years. We waited to start having a family until we were in a more stable financial situation. I also required surgery to correct a severe TMJ problem which involved four and a half years of wearing braces before the surgery could be done. I had my surgery January 5, 1993. By the end of April, 93 we suspected I was pregnant. When the test confirmed our suspicions we were so excited.

I had an excellent pregnancy. No morning sickness. I hated those vitamins and iron, but I took them without fail. If I remember correctly, I battled keeping my hemoglobin level up and towards the end of my term. I had to take two iron pills a day. I had my AFP done and an ultrasound at 16 weeks to establish fetal age and size. They tested me for gestational diabetes because I complained of being thirsty a lot and urinating frequently. However, the test was negative.

On Monday morning I went for my weekly checkup. Dr. Lanford (my OB) said I was going to have this baby by Friday, whether I pushed him out or he pulled him out. He sent me for an x-ray called pelvimetry to see if I was big enough to deliver Tyler (I am only 4'1" and weighed 115 at full term). Dr. Lanford decided that I would have Tyler by C-Section on Friday the 7th at 12:30. Thursday night at 1am my water broke and I went into labor. I did not progress very much so I had to wait until my scheduled time.

I can remember Dr. Lanford telling me I would feel a little tug and then the baby would be here. He held him up for Jim and me to see, but I don't remember that. You see, Tyler turned blue and went into respiratory distress as soon as the umbilical cord was cut. At that point the anesthesiologist put me under so they could attend to helping Tyler. Thank goodness Dr. Sami El-Hassani (neonatologist and head of obstetrics) was in the hospital that day. He came to take care of Tyler so Dr. Lanford could close me up. My husband has a hard time remembering all of this too. I recall waking up in recovery and seeing my mom, mother in law and Jim just staring at me. I could not remember if I had a boy or a girl, so I asked. No one answered. I immediately went hysterical because I thought my baby was dead and I had not even gotten to see or hold him.

They tried to explain what was wrong but I just could not listen or understand what they were telling me. Later when I was back in my room, I kept asking to see him. Everyone kept telling me they were trying to stabilize him for transport. They were going to fly him by helicopter to Charlotte. Finally the flight nurse, Terri Cronk, came in to talk to me. She told me and my family that Tyler would probably not make it up to Charlotte. She said she had to prepare us for this possibility. They brought Tyler in and let down the side of the isolette. I touched his little hand and off they went.

My husband and some of his family went to Charlotte. I had to stay in Spartanburg, SC. They would not release me because my blood pressure was dangerously high (I wonder why??!! ). The doctors were able to postpone Tyler's surgery to Saturday morning because some of his organs began to migrate back through the hole. Tyler had his surgery. Jim and the doctors talked to me by phone. They said he was doing well, but would be in critical condition for the next 7 to 14 days. Tyler had a left-sided Morgagni CDH. His liver, small bowel, transverse and descending colon, spleen and pancreas were in the chest. The doctors noted on Tyler's post-op report that his left lung looked healthy, salmon colored and about 50% of the size it should be. They also noted, as expected, his bowels had a slight degree of malrotation. I was released from the hospital on Tuesday and Jim came down from Charlotte to take me home. I went home without my baby which was devastating. For the next four days, my mother did her best to take care of me. All I could do was cry and want my baby. I never slept and I was constantly doing something in Tyler's nursery. The doctors call this "nesting," sort of like a mother bird. On Friday I went back to Dr. Lanford to have my stitches removed and he released me to go to Charlotte.

I will never forget seeing Tyler there for the first time. He was hooked up to all those machines, wires going everywhere and the huge bandage on his chest. The nurses explained all the machines: the ventilator, heart monitor, the chest tube, NG tube and etc. It seems like all I could do was cry. Thank goodness Jim was so strong. He kept his faith and helped me keep mine. But so much of the time the shock was overwhelming. The doctors and nurses told us Tyler was doing great. When he was about two to two and a half weeks, they decided to try him off the ventilator. He struggled for two hours before they said that's enough and put him back on the vent. We would have to wait several more days and try again. The next time he stayed off for two days, but he began to struggle again so they put him back on once more. They did a procedure called broncoscopy and found he had a floppy trachea (tracheaomalacia.) He was given steroids for two days to help strengthen his lungs and trachea. He was extubated for good, however they put him on nasal cannula. It was at this time we tried bottle feeds, but he developed an ileus (bowel obstruction) and we had to stop until the problem was solved (about one week). Finally we could give Tyler bottles. This is a time I will always cherish and remember because I finally felt like a real mommy when I got to hold Tyler and feed him. After three weeks, the doctors felt Tyler was stable and improving enough to transport back to Mary Black Hospital in Spartanburg, SC.

Tyler remained at Mary Black for one week. He was weaned off the oxygen and continued to feed well. We came home with an apnea monitor and oxygen for blow-by during feeds. The next five months were very scary. I returned to work after eight weeks of maternity leave. My mother took care of Tyler. I believe this was the only was I could have gone back so fast. He was hospitalized three more times for a week each time in April, May and June of 94 for poor feeding and pneumonia by aspiration. It was his last hospitalization at Greenville Hospital when we met Dr. Jane Gwinn. Drs. Gwinn and Helgamo (a third year resident who treated Tyler in ER) were so attentive to his condition. They diagnosed him with Reactive Airway Disease and gastrointestinal reflux. So when he was discharged he came home on oxygen 24 hours a day; he got nebulized albuterol/intal four times a day for Reactive Airway Disease and Reglan for the reflux. We also brought home a sats monitor so we could check his sats while he fed, played and while he was off the oxygen, off the Reglan, and off the nebulized breathing treatments.

With Tyler being our first child and having such a frightening start in life, I worried incessantly about his development. He was late to sit up (nine months). However he crawled, walked and talked within a normal time frame, although I drove my family and friends crazy during all of it. Today I am happy to report that Tyler is doing great. He is in K3 preschool class. He knows his colors, shapes, sizes, ABC's, can count to 20, knows days of the week and months of year and loves to sing all kinds of nursery rhymes. His favorite things to do are play in his sand box, swing and "work" with his daddy. Tyler can even tell you his pectis is a "sinkie hole" and his scar is a diaphragmatic hernia scar.

The problems we face today are frequent bouts of pneumonia and bronchitis. He has not been hospitalized since his first year but we do have to administer antibiotics and do the nebulized breathing treatments when he is sick. Tyler is not a very good eater. He is getting better over time. He never really liked his bottle and was indifferent to solids when they were introduced. He still acts like he could do without food. We searched and asked for help many times with this problem. No one has any good answers or suggestions to help. We were told, "Don't worry about it, he will eat when he gets hungry enough" and then the same doctor would fuss at me because Tyler was underweight.

Perhaps our greatest obstacle now is treating Tyler's severe scoliosis. He has to wear a Milwaukee back brace for a year. He does not like it but accepts it without to much of a fight most days. He will have to wear this brace until he stops growing to avoid having surgery.

Thank goodness I learned about CHERUBS and have this chance to tell Tyler's story. It helps heal the scars. Finding CHERUBS also gave me the strength and initiative to do something for the other families in SC. I contacted my local hospital in Greenville, SC to see if there were any support networks that I could tell about CHERUBS and perhaps find a local family to talk to. I was put in touch with B.J. Bateman at Family Connections (a support group that matches parents of newborns with birth defects/medical problems with families of kids with similar problems. After a long talk about our experiences she asked if I would be a support parent. They had two mothers who had recently found out their children would be born with CDH and they had requested information/support mother. They did not have anyone to call on until I called. I have spent hours talking to these two brave mothers both before and after birth. I helped answer many questions and address many concerns from a mother's viewpoint that doctors just could not help with. Both babies are doing well. I also found out that one of Tyler's nursery teachers (Editor's note: this teacher is Carmen Bramblett, Jason's mom.) is expecting a baby boy with CDH. We have gotten together, talked, shared information, and watched video of Tyler made in Charlotte. How wonderful to help someone to be prepared. I highly recommend volunteering some of your time. I have found that sharing my experiences, helping others understand and be prepared has helped me to heal some of my "scars." God Bless our CHERUBS,


Updated 2002:

Since it has been since 1997 when I first wrote to CHERUBS about Tyler and so much has changed and happened, I thought I would send in an update. Before I get started, all this will probably either make you cry or scare you. And I don't want it to do that, but honestly that is more than likely what you will do. But, at least you will know what his experience has been and you will keep this knowledge in your mind and it might save your precious one's life one day. That is exactly what happened to me ....I remembered reading about the same situation that happened to another member's child. Several, only a handful so far that I know of have had this, I don't think it is so common, but you just never know. Just like the re-herniations, sometimes they do happen with the goretex but there are a lot of kids out there repaired with goretex that have never had a reherniation. We just cannot predict what will come our way. I have learned to rely very heavily on my beliefs and my own instincts. My pillars of strength were my faith, lots of prayer and my husband - he was so strong and I still admire him for it! My biggest piece of advice: always, always, always go with your instincts. Second most important piece of advice, when your child is discharged get at least a copy from his records of his post-op notes and discharge summary - these are the "biggies" to have. There is a lot of very important information in there and you familiarize yourself with it and ask if it has things in it you don't understand. I had copies of all of Tyler's records, read them, but there were things I didn't understand or ask about, and because they didn't mention it to me, I didn't know they were important findings at the time. That came back to bite me!

And as Paul Harvey says, here's the rest of the story -

In January 2001, on Tyler's 7th birthday, he started eating an unusually bigger amount of food than normal. That night he complained of his belly hurting so I figured he had a stomach ache, but contacted the doc anyway. He said not much to do for overeating but to give it time. Well Tyler kept complaining and was too the point of crying when my "gut feelings" hit me that something was not right. Tyler has been followed up by a local pediatric surgeon Dr. Abrams since when I joined CHERUBS in 1997 (he is not the surgeon that did his repair - but I sure wish he had been!) Since Tyler was repaired in Charlotte and we were transported there, after I found out that sometimes reherniations were possible I thought it wise to get him on-board with a pediatric surgeon locally and we finally had one that was familiar with CDH!) Anyway, I took him to the ER, but the wait was long and Tyler feel asleep so I took him back home, thinking he must be okay now or else he would still be awake crying. I returned home with full intentions of my aunt that keeps Tyler before & after school to take Tyler to dr. ASAP in the am, instructing her to make sure to convey to the dr. I was concerned about the patch (Dr. Abrams had always told me if anything went wrong with the patch that I would see gastro-intestinal problems). The pediatrician examined him and found nothing to be concerned about. He thought he might have a stomach virus so he put him on meds to slow down motility. That seemed to work, for a few days.

Six days later, while Jim (husband) was out of town, Tyler started complaining of stomach hurting again, this time the medication didn't help, he fell asleep yet was so very restless, finally waking up at 3 am crying so hard from the pain, I have never seen him in so much pain! Motherly instinct hit me like a brick this time, I was going to take him to the ER and stay, no matter how long even if he "seemed to get better". I took him to the closest hospital (a branch of the main hospital thinking if he needs to get somewhere fast this is the closest one and they can take us by ambulance). So I go in, with guns blazing telling the ER doctor what Tyler's been doing, and what his history is and what I suspected was happening. I am ever impressed with this ER doctor for listening to me, and taking me seriously. He asked me had he been throwing up and I told him no, and he asked if he had been having BM and I told him yes. They ordered ax-rays, he had to drink the barium but before they came to get him he for the ax-ray he started throwing up first barium, then bile and fecal matter (sorry I know that is gross). The x-ray came back enough barium made it so they could tell that it appeared like he had a bowel obstruction and that the area where the patch is looked funny. He contacted Dr. Abrams (pad surgeon) immediately who said get him to Greenville Memorial that he is to go into surgery as soon as he arrives. Well, for some reason, still not acceptably explained to me, they said it would be an hour before an ambulance could transport him inter-hospital system - however if he had been home, one would have been dispatched immediately!) And there he is, needing emergency surgery! So the nurse who was about to get off duty, volunteered to drive us to the emergency room to meet Dr. Abrams at the main hospital which is a 30 minute drive. Thank God for blessings such as that nurse. There are really angels among us!

When Tyler arrived at GHS they did another ax-ray to confirm the first and had me sign a surgical consent form that they really could not diagnose exactly the problem until they were in surgery. When they went in they found that he had a ovules (it is like the intestine is twisted in a manner that it becomes a knot), also a great amount of adhesions (scar tissue) from his chi repair in 1994. The scar tissue is normal bodily function and there is no way to stop it or to know how much the child's body is going to make. This was a mixed blessing, it was not good, but the scar tissue had attached to the bowel and kept it from completely rotating and obstructing (that is why he had been able to have bum's). The ovules came from an initial complication (listed in the discharge summary) that he had a slight degree of mal-rotated intestine. The mal-rotation is common in chi, but doesn't always lead to problems like this. The Ladd's procedure is the technique they use to correct the intestinal twisting. They also removed the bowel adhesions, found that his stomach was adhered to the patch, so they could not actually visualize the patch and chose not to disturb the stomach or the patch, since neither was causing a problem, and they also removed the appendix since it was completely on the wrong side of the body and wouldn't fit back where it was supposed to and isn't really needed.

Tyler is still being treated for scoliosis with wonderful results. He has an S-shaped curvature of his spine. Shriner's here in Greenville SC follows him for that. He wears a back brace for correction in hopes that he will not have to have surgery later. As long as his curves stay put at 20-25 degrees or less he is okay (that is without the brace). In the brace the curves are 12 and 15. He only has to sleep in it at night now, but earlier on he had to wear it 22 of 24 hours.

I have learned that life is an uphill battle, not a rose garden. I have learned how important perseverance is. I have also learned how blessed we are to have Tyler still in our lives. And mostly I have learned that without the support of CHERUBS (and there is so much wonderful support in this group!) I would not have had the strength to make it through all the roller-coaster rides.

Tyler is doing extremely well in all aspects of his life: school, home, socialization. He is making all A's, is an avid student and we are very active in supporting his education. He is a well mannered and mature child and we are proud of that too. He has overcome his shyness and now all that meet him get to know the wonderful kid he is. He has also recently (as well as Mom and Dad) started taking karate lessons (with surgeons permission of course). We hope that this will continue to instill qualities such as respect, honor, discipline, and confidence, plus it is a great way for us to get exercise and spend family time together. He cares very much for CHERUBS and actively helps me in any volunteer assignment we may have. For to be only 8-1/2 he seems to really understand what he has been through and has great empathy for others like himself - and I think that is what we are most proud of.


Update by Tyler's mom, Susan S. Grubb (South Carolina)
1997, Updated 2002