Terbutaline Time

As with past “Echo Wednesday” updates, I am cutting and pasting an email that we sent to our family and close friends (many of whom do not know that I have a blog) to save my having to create a separate and new explanation of our day. I also am including to the left Molly’s latest glamour shot (here she is waving and showing us her beautiful little face).

Dear Family and Friends,

Thank you for your (comments), cards, emails, phone calls, thoughts and prayers. Your support and encouragement means so much to us and makes this experience a lot more bearable.

At our echocardiogram today Molly’s atrial heart rate was irregular, as it was two weeks ago. Her higher atrial heart rate measurements ranged between 141-136bpm and her lower atrial heart rate measurements ranged from 87-84. Her ventricle heart rate measurements averaged 54 bpm. Two weeks ago her higher atrial rate averaged 115, her lower atrial heart rate averaged 85 and her ventricle rate averaged 54bpm. So her heart rate did not show significant change and thus was not indicative of heart failure. There were also no signs of fetal hydrops (abnormal accumulation of fluid within tissues of her body), which we found to be encouraging. Unfortunately there were two indications that heart failure might be not far off. One being when Dr. Cuneo measured the size of Molly’s heart it was slightly enlarged. Apparently a healthy fetus’s heart should not be more than 1/3 the size of its abdomen and Molly’s was just over 1/3 (about 34%) today. Another measurement taken today showed Molly’s heart closer to 29%, however Dr. Cuneo seemed to think the higher percentage was more accurate. The other indication was that they found some notching in her umbilical chord. We had not been told that such notching can be a problem prior to today, but apparently it is a sign of impending heart failure.

Based on these two factors, Dr. Cuneo recommended today that if we want to take the aggressive approach, now was the time. She told us that we didn’t have to decide at that moment, that Bob and I could talk about it later at home. Dr. Cuneo said that if and when we decided to go aggressive, to call her office and let them know and then they would fax my prescription for Terbutaline to our pharmacy. We have decided to be aggressive in effort to try to help Molly and her heart make it to a gestational age at which they might be able to deliver her and she could possibly be strong enough to survive either a heart transplant (if one were available and deemed to be her best chance) or one surgery to implant a pacemaker (which would address her 3rd degree/complete heart block) and another surgery, called the Norwood procedure, which would essentially repair some of the structural defects in her heart and allow it to function more normally. If we went the surgeries route, she would also need two additional surgeries within the first few years of her life, as we understand it.

A few notes about my taking Terbutaline… In preparation for the possibility that we might need to make this decision today, last week I saw our Primary Care Physician (PCP) to have my own heart checked out. Apparently a few women who had severe complications while taking Terbutaline had underlying/undetected issues with their own hearts. So our PCP ordered that I have an EKG (to assess my heart’s rhythm/electrical conduction) and an echocardiogram (to look at its structure). Both came back clear and normal and our PCP assured us that he saw no reason why it wouldn’t be safe for me to take Terbutaline. These results and his confidence, combined with the discussions we have had with our OB, our MFM (high risk pregnancy specialist) and our own research, allowed Bob and I to feel comfortable with the possibility of me taking Terbutaline.

In case I haven’t explained this before, I will take Terbutaline (an oral bronchodilator medication most commonly used to treat or prevent symptoms of asthma, emphysema, and other breathing conditions) every six hours and its purpose is to increase Molly’s heart rate. As a side effect, my heart rate will also increase and that can be annoying and make me a bit crazy from what I understand. I may have jitters, feel like I just drank a lot of caffeine and may have some trouble sleeping, but all worth it, I believe, if there is even a slight chance it might help get Molly to birth alive and give her a chance to survive. That said, I have also heard that my body and I will get use to Terbutaline in time and that taking it can get easier. However, likewise Molly can also get use to the medication and thus at some point it will no longer help her heart rate. We just hope and pray it will work long enough to make a difference for Molly and if not we will know that we tried everything we could to give her a chance. I will have to get back to you on the actual experience of taking it, but please pray for me to have the strength and will power to withstand whatever “normal” side effects I might experience in trying to help our daughter’s heart not fail.

As far as Molly’s chances go, this is where Bob and I believe we got the best news we have received in awhile related to our daughter’s prognosis. Dr. Cuneo told us that they have had babies in the past make it to birth when their mothers began taking Terbutaline at 20 weeks gestation (Molly is 20 weeks 4 days today). We found that to be encouraging. Dr. Cuneo told us awhile back that the longest case that she is aware of, where a fetus with the same cardiac anomalies as Molly, that presented at about the same time hers did (12 weeks), only made it to 28 weeks gestation while taking Terbutaline. So today we asked her at what stage did that mother begin Terbutaline and she told us it was 17 weeks (3 ½ weeks earlier than we are now). That means the Terbutaline was successful for 11 weeks in that case. We also know from the little research/statistics available that of nine mothers who took Terbutaline to try to help their babies survive, the shortest amount of time it worked was 0.5 weeks, the longest was 13.5 weeks and the average was 6.3 weeks. You can do the math with that if you want, but having done it ourselves we choose to find some hope.

We also asked Dr. Cuneo today if 32 weeks would still be the earliest that she would consider allowing Molly to be delivered, as any earlier, she had explained in the past, and Molly would not be strong enough to withstand surgeries and/or a transplant. At first she said yes. However, when I asked if the Terbutaline stopped working around 30-31 weeks gestation, would they likely deliver Molly and she said “yes.” We saw this to be another ray of hope. At one point I said something to Dr. Cuneo about it still being “very unlikely” that Molly would survive despite all of this and that I wanted to be sure I was correct in thinking that. Dr. Cuneo said that she wouldn’t say “very unlikely,” she would say “unlikely.” Yet another exchange that allowed Bob and me to believe Molly might have a chance and that we should seriously consider my taking Terbutaline. Lastly, we asked Dr. Cuneo if she really believed that being aggressive could help Molly or if she was just recommending this for Bob and my “peace of mind,” to know in our hearts that we did everything we could to help Molly. Dr. Cuneo assured us that she wouldn’t recommend that we try Terbutaline for peace of mind, that she does believe that Molly has a chance, though likely it is still a slim one. All of this led Bob and I to believe that my taking Terbutaline, starting tonight, is worth a try, if it means Molly may have even a slightly higher chance at life.

So that is where things stand. Right now, we choose to find some hope and encouragement that there were only a few factors contributing to the potential that Molly’s heart might be starting to fail. Dr. Cuneo explained that in addition to helping to raise her heart rate (which really was still okay today), that taking Terbutaline may also help to slow the progression of her enlarging heart and the notching in her umbilical chord, as well as keep fetal hydrops from setting in. We will return for Molly’s next fetal echocardiogram in two weeks and will continue to hope and pray for the best. I will send another update after our next echocardiogram, Wednesday, February 27.

In the meantime, if you are interested in getting more frequent updates, including when we have other doctor appointments related to Molly’s growth and development, at the suggestion of one of my college friends, who is a social worker at the Mayo Clinic, I have set up a “CarePage” for Molly at http://www.carepages.com/. If you want, you can go there to check out Molly’s page from time to time or you can even sign up to have emails sent to you whenever we post an update there. To do so, when you get to the website, follow the links to “Visit” a Care Page and then where is says “Enter Care Page Name” enter, “BabyBenson2008.”

Please note that if you do check out Molly’s CarePage and ever choose to post something on our “Message Board” there, I ask that you please not reference my blog, out of respect for the fact that some of our family and friends who may visit our CarePage do not know I have a blog, mostly becaue Bob and I aren’t sure if they would understand or “get” why I choose to blog. Also some of our family and friends don’t know that we did IVF and it was during our initial ART cycle that I began this blog back in April of last year. Thank you. There likely won’t be much there, that I wouldn’t post here. However, already some other “heart” families (those who have children with congenital heart defects) have found Molly’s page and shared some of their wisdom and hope from their experiences, which we have found to be very helpful and comforting.

Thank you again for all the love, care and support you have shown Bob, Sean, Molly and me during this difficult and uncertain time in our life. We truly feel blessed and lucky to have such awesome family and friends sharing this journey with us and we know that your positive thoughts and prayers have helped both us and Molly to make it this far in our pregnancy. Take care and may God bless you and your loved ones. Happy (almost) Valentine’s Day! Knowing that our daughter/Sean’s sister’s heart is still beating will definitely help to make it a very happy Valentine’s Day for our family tomorrow!

Love, Kathy