Nathanael Marsceau

Nathanael with older brother Nicolas

November 2003 update Nathanael Marsceau

When you meet Nathanael you are greeted with a smile that warms the heart and reminds one instantly of God’s grace and mercy in the life of the Marsceau family. Nathanael’s soft tuft of hair blends over the area of the cochlear implant, a medical device that provides hearing sensation to individuals with severe-to-profound hearing loss who do not benefit from hearing aids. The following is a diary of events the Marsceau family have encountered in the course of Nathanael’s journey and progress with a cochlear implant.

As the Marsceau’s move forward with the necessary medical treatment for Nathanael their testimony of trust and dependence on God remains constant.

Priscilla has written a poem "Teach My Heart" which is part of a message she shares in the Peace Be Still area of No Tears In Heaven. Her poem is having a positive impact on others - illuminating their hearts for God’s glory.

As you read the following diary of events please lift up the Marsceau family, in prayer, before the Lord.

October 1, 2003

Before you sit down to read this, you might as well get a cup of coffee. If you have received this via e-mail at work, you might want to print it out for a read at home. Then again, you might just want to skip to the end. :-)

Our updates on Nathanael for the past two years have basically used the grapevine system. The present circumstances beg an explanation, hence the volume that follows. Although written mainly for our family, it is easier to send the same update to others who have ties to our little guy. We have repeated a little of Nathanael's implant history, to shed some light on what he will face in the months ahead. You are looking at three or more pages here. It might kill ya' to read it. Shall we just shoot you now, and get it over with? :-D

- - - For more than six hours, we sat in the hospital waiting room on July 17, 2001. The first three were spent with a frustrated two-year-old Nathanael who had been deprived of food and drink since the night before. To support him, we ate nothing, and sipped from the water fountain only when out of his view. The hospital had told us we would be the 9:00 a.m. surgery, but for some reason we had been bumped to noon. Another implant patient got the nine slot. After they finally took Nathanael to surgery, we spent the next three hours eager to hear that Nathanael's cochlear implant surgery had gone well.

In most respects it did--there was just that nagging little X-ray. When the surgeon held the stark black film to the light in the waiting room, we saw, in clearest detail, that wonderful strand of sound-giving electrodes. However, our anticipation quickly turned to apprehension, as we saw where the implant stopped short of making two and a half turns into the cochlea. Instead, it bent neatly over on the tip.

"I think we can work with it," the surgeon remarked optimistically.

Since it was not an option to throw ourselves to the floor kicking and screaming, we had to put aside our apprehensions, hang onto hope, and get on with the business of helping Nathanael recover from surgery.

When we first saw him in the recovery room, he was just waking up and becoming aware of immense discomfort. He especially did not understand why his head was engulfed in a white, lopsided, pressure bandage. He wore it for a week, because it held some of the vital hearing parts in place under his scalp while the surgery site healed. Even after the bandage was removed, it took months for the swelling to completely recede.

His hearing was "turned on," August 20, 2001. Immediately we noticed an improved response to sound. We had been made aware that learning to listen and speak is a long road for any implanted person. But Nathanael's implant was "less than ideally seated," and each subsequent hearing test proved it was not working optimally. His audiologists continued to increase the level of sound his voice processor provided, but wanted to see a picture of how the implant was seated in relation to the cochlea. After a CT scan in November of that year, we were told that a piece of cartilage within Nathanael's cochlea had ossified to bone, thereby preventing a full insertion of the implant.

The surgeon's prognosis: "If the audiologists are willing to work with it, I think we should leave it alone. Otherwise, I could go in and insert a shorter strand."

In December of that year, we followed up by phone with the surgeon, to see if he had discussed Nathanael's implant with the audiologists. We were wondering if they were still willing to work with it.

His response: "If surgery were re-done, we would have to do the other side."

Our hearts sank at this word. Implanting a strand of electrodes destroys the inner workings of the cochlea. Many parents of implanted children want to leave one cochlea intact for possible advances in medicine that could one day rejuvenate hearing nerves and help a deaf ear to hear without artificial devices. Apart from that, if surgery were done on the other side, we hated to think of the "depression" that would need to be made on that side of the skull (like on the first side) to hold the magnet and transmitting parts."

Our only choice was to give the situation time. Meanwhile, we pondered the differing opinions we had received from the same surgeon--the first in November, the second in December.

- - - Since that time, Nathanael has been a busy fellow. Among his regular appointments he has weekly speech therapy with a trained auditory-verbal therapist (in addition to daily speech therapy at home with us). He has learned to listen, understand, and respond to much of what he hears. It is obvious that he likes his "ear." He particularly likes to hear himself "play" the piano. He also likes to listen to children's song tapes. He goes to kindergarten two mornings a week, and Sunday School and Junior Church most every Sunday.

He has made gains in speech, as well, although not as quickly as all had hoped. Having had his hearing for two years, in many ways, he speaks like a two-year-old. He can say some of his colors--his favorite is "Yeh-yoh." He mimics tone and timing to "count" numbers and "say" the alphabet. He "sings" with zest and a booming voice. To hear him sing "Yeet, Wah," the average person would not realize he was singing "Deep and Wide," but to us, it is a joy to hear. He tries to pray for meals, talk on the phone, and do various other activities that require speech. "Muh" means "more", "nah" means "no", "dawp" means "stop", and "sh-hoh" means "show." He will valiantly attempt to say almost anything we ask him to, even though he doesn't hear it the same way we do. Sometimes it shows on his fresh little face as he musters the courage to make his voice and mouth form a new sound. To see it, you would understand why each new word is a triumph, and his hard-won progress, heroic.

As we consider Nathanael's future with an implant that is not giving him optimal hearing, we have to remember that no matter how herculean his efforts, he will never be able to imitate something he cannot hear. Furthermore, Nathanael has no frame of reference as to what his hearing should be, so even if he could form the words, he could not tell us if there is a problem with his hearing. With metal electrodes touching each other within his cochlea, there are too many unknowns. No one knows if they are sparking their own sound, or distorting the sound he gets. So when his audiologist spoke with us in April of this year about trying to fix his implant, we agreed to consider it.

To some, a decision such as this might be a "no brainer." However, we had been given too many conflicting reports over the past two years--we needed some perspective. We also needed to cover every base for Nathanael's sake. When he is old enough to ask questions, he will want to know that we have kept his best interests at heart.

In June and August, we spoke with three different professionals about Nathanael's hearing. Each of them understood the difficult decision we faced. One of the worst case scenarios would be for Nathanael's cochlea to be irreversibly damaged while trying to remove an implant that at least offered some hearing. If that happened, we would be left no choice but to implant his left ear. The worst case scenario there? Running into the same problem we did in the first ear. We had to face the reality that such a series of events could leave Nathanael with little or no hearing. (A hearing aid can never again be used to amplify hearing in a once implanted ear.) Could such things really happen? Yes. Would they? Probably not. But no one had thought Nathanael's original implant would turn out the way it did either.

That brings us to the best case scenario. Even with a successful reinsertion, there would be no guarantee that Nathanael's performance would noticeably improve. We have already spent two years of that window of time in which a child best learns to listen and speak.

Nonetheless, when all was said and done, each of the medical and hearing professionals with whom we spoke thought it worth a try to go back in and attempt a full insertion in Nathanael's implanted ear.

- - - That brings us up-to-date--October, 2003. Nathanael is now four. He has a new surgeon. This new surgeon has known of Nathanael's case from the initial surgery. He does not read the November-2001 CT scan the same as the original surgeon, and is confident that he can help Nathanael. At the end of August, we notified this surgeon that we would like to proceed with implant replacement surgery for Nathanael. It will be done at the same hospital--The University of North Carolina at Chapel Hill. On September 19, they notified us that Nathanael is scheduled for CT scans on both ears on Monday, November 3, and surgery on his implanted ear on Tuesday, November 4, 2003.

We are writing to let you, our family and friends, know all of this, because you have been so kind to ask about Nathanael's progress over the years. The countless ways in which you have shown your support have been humbling. We want you to know that your prayers for us have not been in vain. To us, Nathanael has just shone in his efforts to listen and speak. We have been made aware, time and time again, that God has a purpose for Nathanael's life. The course it takes is entirely in His control. So when we are weary, when things make no sense, when the road seems long, or roadblocks slow our progress, those things bring us back to that wonderful place--our knees. Wherever God takes us on this journey, no matter how many hard decisions we must make, we trust Him to use us each step of the way. As you think of us over these coming weeks and months, we trust you will continue to keep us in your prayers. We need wisdom and strength that only God can give, so that our lives will point others to Christ.

In addition, we are particularly praying

1) that God will guide the surgeon's hand so that the original implant can be removed without damage to the cochlea;

2) that the new implant can be fully inserted in the right ear, so that Nathanael does not have to have surgery on two sides of his head;

3) that God will keep Nathanael healthy so that the surgery will not have to be postponed;

4) that the surgeon's schedule will not require the surgery date to be postponed.

Please pray for Nicolas in his role as big brother. Nathanael learns so much from him. Nicolas is praying (as are we) that Nathanael will soon understand his need of a Savior, and accept Jesus Christ into his heart and life.

Please pray especially for Nathanael. He will once again face pain, an uncomfortable bandage for about a week, and life without "hearing" for about a month. We want to be able to comfort him, and help him understand what will be required of him during his recovery. We are praying that he will not lose listening and speaking skills during this time.

Thank you for keeping us in your prayers.

Sincerely,

Dan and Priscilla Marsceau

"Why sayest thou...My way is hid from the Lord...? Hast thou not known? Hast thou not heard, that the Everlasting God, the Lord, the Creator of the ends of the earth, fainteth not, neither is weary? There is no searching of His understanding. He giveth power to the faint; and to them that have no might He increaseth strength. Even the youths shall faint and be weary, and the young men shall utterly fall: But they that wait upon the Lord shall renew their strength; they shall mount up with wings as eagles; they shall run, and not be weary; and they shall walk, and not faint." Isaiah 40:27-31

November 2003 update Nathanael Marsceau

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