Myla Mary Faith Banman

April 18, 2007 - April 20, 2007

High Level, AB Canada - Full Trisomy 13

"The nurse put her in our arms and the love and emotions that overcame us were incredible. "

Update 4-26-07
Hi, Its been just over a week since Myla was born and it will be a week tomorrow since she left us to go be with Jesus. I'll just fill you in on some of the details of our amazing time with Baby Myla.

Myla was born on April 18, 2007 at 12:36pm. lt was the fastest most amazing birth experience I have ever had. They took her and had to work a bit to get her going but once she was breathing she was fine on her own. The nurse put her in our arms and the love and emotions that overcame us were incredible. She was crying! What a beautiful sound. Almost immediately our girls were there and got to meet and love Myla, as well as grandparents aunts and uncles. My friend Jacquie who is a photographer was there making memories for us, we have some beautiful photos. (I'll post them soon)

We spent the day holding her and sharing her with family. She had two apnea spells that day which scared me so much. But she did well that night, even though it seemed it was getting harder for. The nurses suctioned her every couple of hours which made it better for a while, but she had a lot of mucus. Myla did end up having cleft pallette as well as bilateral cleft lip. She also had extra digits on both her hands and feet, and a herniated bowel (which didn't affect her) Things they never noticed on the ultrasounds, but all these things made her that much more unique and special to us. The next day her cry was that much weaker and her breathing that much more labored, but still we were making plans to bring her home.

We all thought she was doing so well still, and making arrangements for a flight, homecare, feeding people etc. that afternoon. That evening Myla started having apnea spells very frequently, by midnight we thought we had lost her a few times, but she was such a fighter. It was the hardest night of our lives to see Myla struggle. A few hours before Myla passed away, she opened her eyes again and seemed to look right at me as if to tell me "its okay to let me go". She was so peaceful after that, her breathing became normal and she was very relaxed. At 6:00am on Friday April 20th she took her last breath in my arms and went to Jesus looking completely at peace. And as hard as it was we had let her go, and knew it was best for her.

We had a beautiful service for her on Tuesday, April 24. My friend Jacquie and my sister put together a wonderful powerpoint, and Gordie and I got to share about Myla's life. I thought it was so important since so few got to know her. Our pastor gave a wonderful message of salvation. It was a very hard day for us and our girls but It was beautiful at the same time.

This site has been such an encouragement to me in the past few months. I thank you for the encouraging emails I have gotten from other parents. I know I haven't been very active on the site, but I spent a lot of time on it.

Becky and Gordie parents of Angel Myla

4-20-07
I have some very sad news to pass on. Myla passed away this morning April 20 around 6:00am. Please keep Becky and Gordie and their girls in your prayers.

Thank you,
Angie

Update 4-18-07

Hi!
I'm Becky's sister in-law Angie and she had asked me to email you. Becky had her baby girl today April 18 at 12:36pm. They named her Myla Mary Faith Banman and she weighed 6lbs 9oz. She is breathing on her own and doing relatively okay. They have had a few scares with her breathing so please keep her in your prayers. God Bless! Angie

April 9, 2007

Its been a long time since I originally posted our story. We have had several appts since then and are very close to delivery.

So we did go back again at the end of February for an Echo, ultrasound, check up, and also my kidney Dr. and it went very well.

My health is excellent, everything couldn't look better, what a Godsend! Then we had the Echo and they did find some minor heart defects during the echo but the cardiologist said they were exactly that, minor and they would assess her when she was a couple of days old. That in itself was such a blessing, just hearing them talk as if she would make it for more then just hours. Then we had an ultrasound and again she looked good, growing well, in proportion, and a good amount of fluid.

Then we went to go see our doctor who will be delivering and got so much more of a positive feeling from him. As if he saw our baby girl more worthwhile. I'm not sure how to explain it. We left the city feeling just a little more hopeful that we would be taking our baby girl home, if only for a little while.

God has answered so many prayers already. I can feel he is so close and cares so much for our family. I can truly say that its only because of God that things have gone as well as what they have. We have felt the huge amount of prayers going up on our behalf in the past months. Its been truly amazing.

Back to my medical update, we went back again at the end of March for another ultrasound, appt with neonatologist, and with my delivery doctor. Again the ultrasound looked great. She was approx 5lbs 8 ozs and being such a cutie! Hiding her face once again, she truly wants us to be surprised when she comes out! Doctors appt was routine, we're going to try and go back for induction at 38 weeks, because of how far away we are, which is only 1 week from today! Then we met with the neonatologist to discuss care after she was born. We have decided we are not going to take extreme measures.

We want to be able to hold her and love her, not have them take her away and put her through a lot of pain. Yet we wanted some measures taken so that we still give her a fair chance. We were met with some resistance. We were told NICU was not getting involved at all and wouldn't want them to. What's the point of delivering 8 hours from home, if we could get better care at home, we wondered, out loud. It seemed so unfair that because of Trisomy 13 our baby girl didn't seem to deserve the small amount of intervention we were asking for.

Finally when it was all said and done, she conceded and put it down on paper. We left feeling quite overwhelmed and a bit discouraged. Since then I have gotten over that, and realized again the doctors are only human and can only go by what she sees and what she is taught. The medical field does not understand faith, or a God that is so big that he knows and loves this little baby more then I ever could. The last couple of weeks have been harder, the anxiety and wondering about the outcome has gotten the best of me at times. Also feeing unprepared. Unprepared to bring a baby home and also very unprepared to not bring her home.

But again God has been so good and showed me that he is always in control, and I am so glad for that. So our time is drawing closer, only 1 week!! This week is Easter break, and my girls are home from school, and I plan on relaxing with them and spending time getting ready for our baby, which by the way finally has a name. Myla Mary Faith (almost for sure). Never have we been so undecided on name! We wanted so much to be sure it was just perfect for this special baby. Myla means compassionate, and Mary is after my sister who gave me a kidney, and Faith just because God is always faithful.

Anyways this is super long, but there was so much to be said. Again I say this site has been so wonderful in the past months, I may not participate much but I spend a lot of time on it. Thanks for the encouraging emails, and the booties and Gemma Bear were wonderful!

Becky
2005bb@telus.net

- - - - -

Hi my name is Becky, and our baby girl was diagnosed full T13 a few weeks ago. I am now 28 weeks. My first ultrasound showed unclear facial features and bilateral pyelectisis. Which was said to be clinically insignificant. I am considered an high risk patient since I've had a kidney transplant 5 years ago. We live in northern Alberta, Canada so we were sent to Edmonton for a follow up ultrasound and a visit to the high risk clinic. My doctor reassured he had seen this hundreds of times and everything would be fine.

Well, when we arrived at Edmonton for our appointments (January 2, 2007) the first ultrasound revealed Cleft lip and ecogenic foci on the heart. We were then sent to the hospital to have a level II ultrasound and see a different high risk specialist. At that time we found out about the massive polycystic kidneys as well. The doctor explained these could all be isolated findings but the may also mean a genetic disorder. He said the amnio was necessary and would give us much needed information. We agreed and did it right then and there.

With each passing minute it felt like my world was crashing down around me more and more and there was nothing I could do about it. After the ultrasound and amnio we had a consult and the doctor explained more about the grave situation with the kidneys, never telling us the about what he must have suspected about the Trisomy 13. We left with a list of different people to see the next time, pediatric nephrologist, genetics, NICU, echocardiogram for the baby (even though her heart looked good on all ultrasounds besides the ecogenic foci), and another ultrasound.

We were completely stunned and so heartbroken. We had an 8 hour drive back and I cried so much of the time.
This is our fourth child and also our fourth baby girl that we are having. I had two girls before my transplant and 1 after. It was big decision to get pregnant because of the risk to the kidney but we both wanted it so badly and the doctors gave us the go ahead since I was so stable and my last pregnancy went so beautifully. Never had we imagined a situation like this could arise.

They definitely gave us the option for termination, we refused regardless of the outcome of the amnio. God is very real to us and we know that he takes care of us and has a plan and a purpose for every individual person he creates and this baby is no different.

Anyways a week after we got back, we got the call that the FISH results were back and he told us that it was Trisomy 13. I had never heard about this before and once he explained it a bit more I was once again completely devastated. He told me that it was always lethal and all they ever did was comfort care, if the baby made it to term. He thought there was no need for all the follow up appointments he just wanted to see us back when the final amnio report came in to discuss the option.

He informed me there was no time restriction for termination with this type of diagnosis. I was 24 weeks at this time. I hung up feeling completely numb. I cried so much that day.

Within the next few days I started researching and found this site and was truly encouraged after what I had heard from the doctor. Now I am 27.5 weeks and just got back from my consult with doctors in Edmonton. They went over the amnio which did indeed show full T13, and what the care would be and so on. I insisted on an ultrasound because I wanted to see how she was developing how much fluid there was and such.

They agreed and were very surprised at the findings she is growing well only 1 week behind dates, plenty of amniotic fluid, meaning the kidneys were functioning well, and they still couldn't see any issues with the brain or the heart, no extra digits or any of the usual signs of T13. So they agreed to do the echo the next we come down on Feb 26th and a follow-up ultrasound. I feel this is a small victory because it seemed like previously there was no need for much prenatal care.

I am determined to fight for this little girl. We love her so much already and want very much to meet her and to hold her. We will probably have to be quite assertive with the doctors, but I'm ready. Every time I think about it she seems to start kicking and moving telling me that she is precious and very much worth it. Thanks for listening and I would love to hear back from anyone, especially someone with a similar case. God Bless You.

Becky Banman 2005bb@telus.net