Effie O'Brien

October 2, 2007 - November 1, 2007

San Francisco, California (CA)

To Heaven ~ October 30, 2007

We buried our precious daughter Effie May yesterday (November 1, 2007). She lived for four weeks – one week in the hospital and three weeks at home. What a gift! We were thinking that she might live only a couple of hours, and so every extra hour felt like “bonus time.” Although this was an emotionally difficult time, it was so worth it in so many ways. I can’t begin to express what a blessing Effie was to us and to our family. I feel so much different, now. I kind of know what Job felt when, after all of his suffering (which was much more than mine), he said “I had heard about God, but now I have seen him.” (Job 42:5) God’s mercy and compassion were evident in too many ways to list.

Effie was born 15 minutes after we arrived at the hospital, at 12:15am! We had already decided that we wanted to give her every chance possible to live as long as possible, and so, after about 15 minutes of holding her (and singing her a hymn that I had sung to her often while she was in the womb), we let them take her to the Neonatal Intensive Care Unit (NICU). Jeff accompanied her. Letting them take her to the NICU was one of the hardest things I’ve ever had to do, because I knew that Effie could die at any moment, and that I might be giving up the only time I had to spend with her. But, thankfully, when I got to the NICU an hour later Effie was still alive!

She was undergoing a lot of medical testing on that first day, and almost all of the news was upsetting. However, the rest of the time that she was in the NICU, and undergoing follow-up testing, all the news was good! She didn’t have kidney problems, despite the brightness of the kidneys on the sonogram. She did have a complete bowel system after all, and it was working fine. Her heart looked good, too – no need for even “minor” heart surgery down the road. And, she could be put on oxygen with nasal cannula instead of having to be in an oxygen tent. The nurses in the NICU were wonderful, amazing people, and we learned so much about how to care for Effie while we were there. Her main (and only life-threatening) problem was that, due to her brain condition (semi-lobar holoprosencephaly) she desaturated regularly. This means that her oxygen level went down even though she was still breathing – she was breathing too shallowly. Sometimes this happened a couple of times a day, sometimes numerous times. It was super easy to get her to breath more efficiently, though. We merely lifted her a little and gently rubbed her back for a few seconds. Nothing to panic over. But, Jeff and I also took a CPR refresher class while Effie was still in the NICU, preparing for what might happen in the future.

While Effie was in the NICU Jeff and I spent all day every day in there with her, holding her, changing her diaper, learning how best to care for her (especially during desaturations). After I was discharged from the hospital, Jeff and I stayed at a hotel a few blocks away. We still, of course, didn’t know how much time we would have with Effie, so we made every effort to spend all the time we could with her. Our parents made this possible by watching our other daughter, Corinna, age 17 months. At the hospital we had daily discussions about Effie with the doctors, and began getting things ready to make the transition from hospital to home care for Effie. We had an especially difficult time locating an oxygen desaturation monitor. It was only due to answers from families on the trisomy 13 e-mail list that we were able to find one. One of the doctors had told us that such a machine for home use did not exist, and so we would be taking our daughter home “to die.” (He told us that he thought that she would die within a couple of days). We decided that we would not take our daughter home to die. If the hospital were the only place with an oxygen desaturation monitor to tell us when Effie’s back needed to be rubbed (so she would breathe more deeply), well, she would spend her life in the hospital with us at her bedside. But, after posting a question to the trisomy 13 e-mail list and getting about 10 responses telling us that there is indeed such a machine for home use and that it’s called a pulse oximeter monitor, we began to plan again for Effie to come home. Our parents had come to stay to help us with Effie, and we were to need them every step of the way. Our sisters also came and went and helped us out immensely with cooking and cleaning, and with holding and loving our little Effie.

We left the hospital after being there for one week. It felt triumphant to drive up in our driveway with Effie! When we got home, we took her off the portable oxygen that we drove her home with, and put her on the oxygen machine waiting for us in the living room, and we spent almost all of our time in our living room for the next three weeks. We discovered immediately, though, that the pulse oximeter unit that had been delivered to our house was not what we had ordered, and it took another five days to get the proper one (one with an alarm). So, for the first five days and nights, we took shifts in twos (usually one parent and one grandparent) staying up all night long staring at Effie’s face to catch any “duskiness” (blueness, a sign that she was desaturating). We also had to watch her face all day, of course. Those were wonderful days even though we were all sleep-deprived. How many opportunities do we have to spend hours of uninterrupted time with family, talking about the really important things?

Well, we got a pulse oximeter monitor (monitor, not unit) with an alarm after we had been home for five days, but we still sat up with Effie at nights. We were used to it by now, and were nervous to sleep, even though we could sleep now, since the monitor would alarm when Effie desaturated. In the last week and a half of her life we were able to get a little sleep at night. During my shift, I slept with her on the couch. Wonderful memories, because she always snuggled up next to me, turned towards me with her little hands in fists pressed up against my chest or neck. Sometimes I would fall asleep with her next to me on her back, but when I awoke she was always snuggled up next to me. I loved it! In the last week of Effie’s life we even put her in a crib to sleep a few hours at a time. Previously, she had hardly been put down since we got home with her! There was always someone willing to hold her.

This was a time when our whole family – Jeff’s and mine – became close. We were going through such a special experience together. Our families (Jenkins and O’Brien) got to know and appreciate each other. Our parents showed how selfless they are, and allowed us to focus all of our energy on Effie. They cooked, cleaned, watched our other daughter, sat up all night with us while we were monitoring Effie (night after night), and sat with us all day to help us by handing us the suction machine or water or Effie’s pacifier, etc. We can never thank them enough for giving us the gift of time with Effie. I was able to sit on the couch in the living room for three whole weeks holding my Effie in my arms and trying to imprint on my mind the look of her tiny face and body. She was blind. Her eyes were fused (permanently closed), and I found that my favorite place to kiss her was on her eyes. She received many, many kisses in her short lifetime.

We really enjoyed getting to see a little bit of Effie’s personality and discovering that you can still communicate with someone who can’t see or hear (she couldn’t hear very well if at all). She acted just like any other baby, just needed a little extra care. It was wonderful to have her in our arms. She loved to sleep with her head pillowed on my hand. (She was a tiny baby – born at 4 pounds, 1 ounce.) But, she always calmed down and fell asleep the quickest when she was in the crook of her daddy’s arm. Jeff spent as much time (especially at nights) caring for Effie as I did.

The last week saw Effie in decline, but we weren’t sure about it at the time. One day she would seem to be fading and the next she would seem stronger, and then the next she would be weak again or would have more seizures or would have a harder time keeping her oxygen levels up. But, I have forgotten to mention that the first weekend that we had her home Effie stopped breathing for the first time. Jeff and I took turns performing CPR, and she revived after about 10 minutes. This happened seven more times that first weekend, and we decided to abandon CPR and just try to stimulate her to breathe by rubbing her back and neck. The CPR was pretty traumatic on all of us. She did better the second week she was home. Then she stopped breathing once in a while the third week she was home, but was always able to be revived with some stimulation, though sometimes it was after 10 or 15 minutes. Some days she would stop breathing 10 times, some days not at all. What a roller coaster! Then, during her last few days and nights, she stopped breathing many, many times. We often thought it was the end, only to see her start breathing again. She had a really good day and night just before the end. And then, the night before she died, she stopped breathing over and over. I was reviving her all night long – falling asleep with her, being awakened by the monitor, trying to get her to breath, rejoicing when she did, falling asleep, being awakened . . . I think I had about five minutes of sleep at a time. It was exhausting, but every moment with our little helpless daughter was worth whatever work it took. The last few times she stopped breathing it was harder to get her to revive. It took almost 30 minutes one time. Her heart never stopped beating, though, even though it became very, very faint sometimes when she wasn’t breathing. She stopped breathing for the last time at 11:45 on October 30th. Jeff and I held her and then took her off her oxygen and monitor and washed off the stickiness on her face where the tape had been. We held her for an hour before we went out and told the rest of the family (who had left the room to give us some time alone when it seemed that Effie was passing away). At 5pm we walked and carried our little daughter up to the cemetery at the top of the hill near us, and gave her over. We buried her yesterday, in a beautiful simple little pine box (just what I had wanted), and had a really nice graveside service with just her grandparents and an aunt there along with Jeff and me and our daughter Corinna. It was lovely.

We took so many photos of Effie and lots of video, too. I am hoping that she will remain clear in my memory for a long time. She certainly made an impact on a lot of people. All of her family loved her, and so many friends and acquaintances and even strangers prayed for her and for us. We have been very blessed, and I can’t thank God enough for creating her special and giving her to our family! I also am grateful to God for giving me all of that love for her and the strength to care for her and watch her die and yet be completely at peace about it. I have cried many tears because I miss her, but I thank God that I have never questioned his wisdom or his plan. I have learned a lot about how sinful I am and how trivial I can be. I have learned again how prideful I naturally am, and how silly it is to be proud of the things I am proud of. I learned a lot about what is truly important. I am reminded that intelligence is not as important as we all are inclined to think. I was shocked into the realization that life is short and I had better wake up and get busy spending time with my other daughter, training her, loving her, enjoying her. And, I have learned that my parents were right all along – God really does help us through everything he gives us to bear. I have really seen that now, and I am grateful for that experience.

At the graveside service my father spoke and gave his reasons for thinking that we can know from scripture that little ones go to Heaven when they die. I am especially comforted by the passage in the Bible in which God tells Jonah that he pities Ninevah and doesn’t want to destroy it because there are more than 120,000 there who don’t know their left hand from their right. This shows that God is concerned about infants and people who can’t reason. What a compassionate God the scriptures reveal to us!

I read some verses at Effie’s graveside service. They are mostly about God’s sovereignty and his compassion, and they are a comfort to me. Here they are. I hope they are an encouragement to you, too:

“He does as he pleases with the powers of heaven and the peoples of the earth. No one can hold back his hand or say to him: ‘What have you done.’” (Daniel 4:35)

“He brings out the starry host one by one, and calls each of them by name. Because of his great power and mighty strength, not one of them is missing” (Isaiah 40:26)

“For the LORD Almighty has purposed, and who can thwart him? His hand is stretched out, and who can turn it back?” (Isaiah 14:27)

“For you created my inmost being; you knit me together in my mother’s womb . . . all the days ordained for me were written in your book before one of them came to be.” (Psalm 139:13,16)

“Your hands shaped me and made me . . . you molded me like clay . . . Did you not clothe me with skin and flesh and knit me together with bone and sinews?” (Job 10:8-11)

“Who gave man his mouth? Who makes him deaf or mute? Who gives him sight or makes him blind? Is it not I, the LORD?” (Exodus 4:11)

“And when Jesus passed by, he saw a man which was blind from his birth. And his disciples asked him, saying, Master, who did sin, this man or his parents, that he was born blind? Jesus answered, Neither hath this man sinned, nor his parents: this happened so that the work of God might be displayed in his life.” (John 9:1-3)

“O the depth of the riches both of the wisdom and knowledge of God! How unsearchable are his judgments, and his ways past finding out!” (Romans 11:33)

“For my thoughts are not your thoughts, neither are your ways my ways, saith the LORD. For as the heavens are higher than the earth, so are my ways higher than your ways, and my thoughts than your thoughts.” (Isaiah 55:8,9)

“Righteous art thou, O LORD, and upright are thy judgments.” (Psalm 119:137)

“For men are not cast off by the Lord forever. Though he brings grief, he will show compassion, so great is his unfailing love. For he does not willingly bring affliction or grief to the children of men.” (Lamentations 3:31-33)

“He hath not dealt with us after our sins; nor rewarded us according to our iniquities. For as the heaven is high above the earth, so great is his mercy toward them that fear him. As far as the east is from the west, so far hath he removed our transgressions from us. Like as a father pitieth his children, so the LORD pitieth them that fear him.” (Psalm 103:10-13)

“Remember how the LORD your God led you all the way in the desert these forty years, to humble you and to test you . . . He humbled you, causing you to hunger and then feeding you with manna . . . to teach you that man does not live by bread alone but on every word that comes from the mouth of the LORD” (Deuteronomy 8:2-3)

“Before I was afflicted I went astray: but now have I kept thy word . . . It is good for me that I have been afflicted; that I might learn thy statutes.” (Psalm 119:67,71)

“It is better to go to the house of mourning, than to go to the house of feasting: for that is the end of all men; and the living will lay it to his heart.” (Ecclesiastes 7:2)

“Though the fig tree does not bud and there are no grapes on the vines, though the olive crop fails and the fields produce no food, though there are no sheep in the pen and no cattle in the stalls, yet I will rejoice in the LORD, I will be joyful in God my Savior.” (Habakkuk 3:17-18)

“Is it not from the mouth of the Most High that both calamities and good things come?” (Lamentations 3:38)

“When times are good, be happy; but when times are bad, consider: God has made the one as well as the other” (Ecclesiastes 7:14)

“What? Shall we receive good at the hand of God, and shall we not receive bad?” (Job 2:10b)

“The secret things belong to the LORD our God, but the things revealed belong to us and to our children forever, that we may follow all the words of this law.” (Deuteronomy 29:29)

- - - - - -

10-21-07

Effie May O'Brien was born on October 2nd and weighed 4 pounds, 1 ounce. She spent one week in the Neonatal Intensive Care Nursery at Kaiser San Francisco, and then came home with us.

While in the NICU, she underwent all kinds of testing, and we are happy to report that she does not have any major problems at this time other than a problem with oxygen desaturation (due to semi-lobar holoprosencephaly). Jeff and I took a CPR course while Effie was in the hospital, and we have had to perform CPR on little Effie on several occasions. We have a pulse oximeter monitor that alarms every time she has an episode, and we immediately respond by rubbing her back or neck to stimulate her to breath more deeply. She also has seizures that last about a minute or so. They sometimes seem to bother her these days.

Her eyes have never yet opened, and we don't know how well she hears. (Her hearing test at the hospital was inconclusive.) She has a bilateral cleft lip and an extra digit on each hand and on one foot. We think that she is adorable.

The best thing about her, though, is that she is such a sweet baby! She loves to sleep cuddled up in my arms, turned towards me, with her little fists resting against me. I sleep in the living room with her in my arms at night, and during the day I usually sit and hold her.

But, she's almost three weeks old, now, and so Jeff and I are starting to talk about how we can "get back to normal" while caring for our little Effie. Our one-and-a-half-year-old daughter, Corinna, enjoys having a baby around, and even calls her by name. We have been blessed to have our entire families come to meet little Effie and to help us out at this time.

Our parents have been tireless in their efforts to help us care for Effie. Our moms have even been sitting up at nights with us while we keep watch over Effie. (Thankfully, we can now sleep, because we have a pulse oximeter monitor, but that first week when we didn't, well . . . no one got much sleep because we had to constantly look at her face to make sure she wasn't turning blue.)

All of our siblings have flown out to meet Effie, too, and have been great helps to us. One sister even flew all the way from Indonesia to meet her little niece. Many, many people and a number of churches have been praying for us and little Effie May, and we are very grateful for those prayers.

God is hearing, and we are enjoying more time with Effie than we ever expected to have. (We didn't even have an outfit ready for her to wear or a place for her to sleep at home -- we just weren't expecting to get to bring her home!) She is such a blessing in so many ways! We have been having some of the best days of our lives.

Effie has really brought our families together; and we have had nothing but help and support from all of our family and friends. We are so glad to be walking down this path!

Jeff & Joanna O'Brien
jeffnjo@yahoo.com

- - - -

August 23, 2007

I wanted to update our story since our initial “story” is only a few sentences long. We don’t have much new news, but I wanted to share my thoughts and feelings on having a baby with Trisomy 13.

We learned at week 21, by ultrasound, that our daughter Effie is 90% likely to have Trisomy 13. She has semilobar holoprosencephaly, a second digit on her left hand, a bilateral cleft lip, and perhaps a heart abnormality. I will be going in for a second echocardiogram this coming Thursday to see if we can see a hole in the heart that the cardiologist thought he saw in the first echocardiogram.

We are doing well with the news. I know that it will be extremely hard when Effie dies, whether it be hours, days, months, or years after birth, but I also know that the time she is supposed to live was set by God before he created her. Psalm 139:16 says “in your book were all written the days that were ordained for me, when as yet there was not one of them.” I know that God created Effie the way he did in his infinite wisdom and love and mercy to us. And, I know that God does everything well and for a purpose. Although we can’t know why God created Effie to live a different kind of life, I know the God of Abraham, Isaac, and Jacob, that he is a God of great mercy and compassion, and I know that everything he does is good and right.

Isaiah 55:9 says, “For as the heavens are higher than the earth, so are my ways higher than your ways, and my thoughts than your thoughts.” So, although I don’t know what God’s design and purpose is with Effie, I accept the fact that he has one, and that is enough for me. And, Psalm 119:91 tells us that all things are God’s servants. So, I am comforted. We see throughout the Old Testament God sending sorrows and hardships on the Israelites because he loves them with an everlasting love and wants them to turn back to him. His afflictions were purely for their good, and I believe he still does this for us. I am just grateful that God has revealed himself well enough through the scripture that he has given us, that I can trust in him and be at peace even in a situation like this.

It is also encouraging to me to know that the Bible repeatedly assures us that children are a gift from God. I take that to mean all children. Effie has already been a blessing to me, and I look forward to realizing in many more ways what a gift from God she really is.

Our family and friends have been very supportive and encouraging. Effie’s grandparents assure us that they love Effie just like they love their first granddaughter, Corinna (see photo). We look forward to continuing to enjoy Effie for as long as she is here with us.

Jeff & Joanna O'Brien
jeffnjo@yahoo.com

- - - -

 5-16-07

Our names are Jeff and Joanna; we live in San Francisco, California. Our T13 baby girl (Effie) is due on October 21st. She was diagnosed at 21 weeks by ultrasound, so it's not a 100% sure diagnosis.

We declined an amniocentesis. The genetics counselor told us that the likelihood of T13 is over 90%, so we felt comfortable not getting an amnio.

We are doing well and looking forward to hopefully meeting our precious baby in October. We have another child, one-year-old Corinna.
Sincerely,

Jeff & Joanna O'Brien