Junior's Web Page

An explanation of our baby's condition.

Translated from fetalspeak by Trevor Unrau

January 22, 2000

Hi there! My name is Junior (mostly because my parents haven't been able to agree on a name for me yet. They don't even know my gender!) I am -2 months old, which means I'll likely be born some time at the end of February.

Four months ago, my parents brought me to the hospital to take some pictures of me with an ultrasound machine. Knowing that they were watching me, I did my best to dance and wave for them. Mom and Dad were amused, but I don't think the technicians were. They were mostly interested in getting some close pictures of my head, heart, and spine. I guess I made it hard for them, because 3 different technicians and a radiologist had a go at working the machine. Everything seemed fine, though, at least that's what Mom and Dad thought. But they were soon to discover my little secret.

You see, I was trying to hide the fact that there were some problems with me. Serious problems. When Mom and Dad did find out my secret, it was very hard for them to take the news. I can understand that, because I don't act like there are any problems. I'm not in pain, and I move and kick like any other fetus my age. In fact, my mother has been told she should expect a normal pregnancy up until the day I'm born. After that, things become significantly more complicated.

There are actually three significant problems with me. They are:

Hypoplastic Left Heart Syndrome
Underdeveloped brain (causing hydrocephalus)
A kinked lower spine

The first problem, Hypoplastic Left Heart Syndrome (HLHS) is the most serious problem of the three. It is characterized by an underdeveloped left ventricle in my heart. For an explanation of how a normal heart operates and what Hypoplastic Left Heart Syndrome, there is an excellent booklet on a web site called "Little Hearts Matter". The book is found in the “Info+” section.

Fortunately, there are things that can be done for my defective heart. There are a series of surgical procedures called the Norwood Procedure, the Cavo Pulmonary Shunt, and the Fontans Procedure which would have to be performed at various stages of my life (see the book). There is also the possibility of having a Heart Transplant. Each of these things carry special risks in my case. The Norwood Procedure would be done very soon after I'm born, and because of the other two problems, there is a chance I won't be strong enough to endure the procedure, especially if surgery needed to be done right away to help the other two problems. As for a Heart Transplant, there is a risk I would be rejected as a candidate for a heart, because there are other more healthy babies waiting for a heart, and there are just not enough to go around, so they would get first chance.

The second problem I have is much simpler than the first, but is just about as severe. The simple fact is that my brain is too small for my head. What this means, is that my brain has not developed properly to entirely fill the space in my head, so the extra space is filled with fluid. At first, my mother's doctor thought I had a condition called Hydrocephalus, where there is excess water on the brain which can cause excess pressure on the brain if it isn't corrected. Surgery can be done to fix this by draining the fluid with a shunt. In my case, though, there is no pressure on my brain, it is actually underdeveloped, so there is nothing that can be done about it. This means that when I am born, I may have anything from reduced mental and physical abilities to an inability to sustain my own life.

The final problem I have is that the base of my spine is kinked inward. A normal spine has an outward curve near the base. This problem can be corrected with surgery, and has varying degrees of outcome based on the severity of the condition. If there is no spinal cord damage, then it's possible to restore normal operation of my lower limbs. If there is damage to the spinal cord, I may be paralyzed below the hip.

Well, that just about sums it up. It seems I am in pretty bad shape, although I try my best to make it not seem that way. When I'm awake, I make sure Mom knows I'm here by moving around and punching her tummy. Mommy's doctor says I'm growing properly and am the right size for my age. Everyone expects that I'll come into the world as naturally as any other baby.

I will be born at McMaster University Hospital. There will be extra doctors and specialists around for my birth to look after me and handle any special circumstances. They will take me to the special neo-natal intensive care unit to do an assessment and monitor my condition. Mom and Dad will then have to decided what they want the doctors to do for me. If the surgeries outlined above look like they will help me, I will be transferred to Sick Kid's Hospital in Toronto. If it looks like the surgeries might be too much for me to handle, or they can't stabilize me, I'll stay at McMaster and receive palliative care.

Thanks for taking the time to read my story. I will try to keep this page up to date as things progress. Mom and Dad love to hear from people who are thinking of the three of us or praying for us. They also don't mind answering any questions about me.

May God richly bless you,

Junior.

February 3, 2000

I had my picture taken again today. If you'd like to see it, click here.

Mom saw her obstetrician again today, and he said that I am getting pretty big. Almost big enough to be born. So he said he'd like to start inducing labour starting on the 15th. The doctor will start with a gel which may or may not work. If it doesn't, Mom will go in on the 18th and be given an IV which will start things fairly quickly. This means I'll probably be born somewhere between the 15th and the 18th. Wow, I'll finally get to see some of you nice people!

Mom and Dad seem a bit anxious. The time is coming soon for me to arrive, and they're still working on a name for me! I know they'll be fine, though, and God will look after us. I'm looking forward to that day, as I know Mom and Dad are too. It may be warm in here, but it's getting a little cramped for space...

Hope to see you soon,

Junior.

February 20, 2000

Well, the big day finally arrived, and "Junior" came into the world. At 2:23 am on Saturday February 19, Theresa gave birth to a baby girl who we finally named "Faith Anne". She weighs 6 pounds 8 ounces and is 18 1/2" long. Theresa was in labour for 16 hours before Faith was born via cesarean section. A full compliment of medical specialists were on hand in the operating room and were ready for any situation. In the end, however, when the pediatric doctor examined Faith's heart, she determined it was just too weak to proceed with any medical interventions. Theresa and I were able to hold Faith for about 1/2 hour before the strain on her heart was too much for her. The Lord mercifully took Faith from us into His presence in heaven at about 3:00 am.

We are saddened that Faith was not with us long, but we knew that this was a possibility long before she was born. We are glad that, if in fact she suffered any pain at all, it was not for long. Although we had hoped and prayed for a better outcome, the Lord in His ultimate wisdom had a different plan.

Theresa and I would like to thank everyone who have extended their thoughts and prayers to us, they are very much appreciated. Please continue to keep Theresa and I in your prayers in the coming weeks, especially Theresa as she deals with many things including a long (4 to 6 weeks) recovery from the surgery.

May God richly bless you,

Trevor and Theresa Unrau.

March 4, 2000

Theresa and I are touched and blessed by the outpouring of kindness in the form of flowers, cards, emails and donations on behalf of Faith. Some folks have even surprised us with the odd meal dropped at our doorstep. The words of encouragement and thoughtful gifts have been tremendously uplifting at this time. If you haven't said anything because you don't know what to say, I offer the following guideline. It was given to me by another couple who went through a similar ordeal as ours. My apologies to the author, but it was unsigned.

GRIEVING PARENTS

Enter at your own risk...

(but we pray you will)

PLEASE...

Know that we need you. We may not ask for help (we may be much too numb), but we need to know that you're there.
Know that we do not expect you to make us feel better -- to take away our pain. Right now no one can. We need your support, your acceptance of our need to grieve, and your willingness to live with the helplessness you'll feel.
If you haven't called because you cannot handle our grief and your helplessness, say so. We can truly understand that, and we'll feel better than we would if you used excuses and made us think you didn't care.
Try to tolerate our anger, if you can. It's not really you or others who anger us; it's just that we lost what we loved. We pray you'll forgive our "unreasonable" outbursts. We pray you'll understand.
Don't try to stop our tears. Our tears may be hard on you, but they are a healthy way for us to release some of our pain. Crying is good for us; please try to sit with us and let us cry.
Don't try to cheer us up by comparing "worse" losses. Pain is pain, and ours must be acknowledged.
Understand if we can't bear to be with your new baby or attend a baby shower or dedication. We do wish you joy, and we even feel gladness for you, but our grief cannot be suppressed.
Don't tell us that what happened must have been "God's will". Hearing that brings us no consolation right now and only adds to the spiritual confusion and isolation we feel.
Don't expect that hearing "They're with God", should be all that matters to us. We may cling to that belief too, but we still ache to have them here with us, and we ache to know that they are safe.
Don't try to comfort us by saying that we can try soon to have more children. There is not, nor will there ever be, a replacement for Faith. Love cannot be discounted or replaced... it simply is.
Don't say, "It was better this way -- better to not have had them longer". We ache for more time with them.
Don't say, "I know how you feel". No one knows that. Please ask instead how we are today, how we feel.
Offer specific help... a meal, a laundry done, a free hour. We are deeply hurt to think very far ahead.
Don't tell us to put this behind us, forget, and get on with our lives. These are our lives. We need to grieve. We need to be ourselves, and we need not to forget, but to find a way to remember in peace.
Accept us in our grief, and we'll always remember the healing love that you offered us.

We couldn't have said it any better.

If you didn't catch it on the home page, I put up some pictures of Faith after her birth (click here). She was a beautiful baby, with no outward appearance of the problems she had on the inside.

Once again, we thank everyone for their thoughts and prayers. This will likely be my last entry on this page. I hope it was a help and guide to everyone that read it.

May God once again richly bless you,

Trevor & Theresa Unrau.

April 27, 2000

I didn't think I would be adding any more entries to this page, but one last event occurred that deserves some space.

A few weeks ago, we received the final autopsy report on Faith. I won't bore anyone with details of its contents, but it revealed results that were good news for us. The doctors concluded that the condition of Faith's heart was indeed very serious, and that all the decisions we made were certainly the best choices for Faith. We also learned that her conditions were not caused by anything Theresa did, nor were they anything that could have been prevented. Furthermore, there was no problem with her genes, so there are no gene defects that Theresa or I might be carrying. The only thing that could not be determined was a definitive cause, although it was suggested it may have to do with Theresa's diabetes. Even still, it is simply the nature of that disease, and the chances of any problems occurring again in a future pregnancy are next to zero.

Certainly, this report lifted a great burden on our hearts. It means we did all the right things for Faith, and we don't need to feel that there could have been more we could have done for her. It also means we should not fear continuing to try starting our earthly family (although we have a fair size one in heaven already).

It seems appropriate to end this page on such a happy note. I'm sure Faith is keeping an eye on us and wishing us to be happy, and go on making more siblings for her. God willing, the next ones will keep us company here on earth before we join Faith ourselves.

May God bless each of you,

Trevor and Theresa Unrau.